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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: http://www.niddk.nih.gov/research-funding/research-programs/Pages/default.aspx#cat:kidney-dise

The Chronic Renal Insufficiency Cohort (CRIC) Study is an ongoing prospective observational cohort study of approximately 4,000 men and women with 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 kidney failure (end-stage renal disease-ESRD).  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.  Information from the study will be used to plan future clinical trials to slow the progression of CKD and to reduce associated morbidity, including cardiovascular disease.  The first cohort of CRIC Study participants, which included persons with mild to moderate CKD, were enrolled from 2003 to 2008.  They are followed each year with in-person clinic visits with an interim telephone call.  In July 2013 recruitment began for a second cohort (1,500 participants) of study participants with more preserved kidney function.   All study participants will be followed until 2018 and possibly longer.  A number of ancillary studies have been conducted (and many are ongoing) which examined a broad range of outcomes and risk factors of CKD.  New ancillary studies continue to be implemented.

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 2018. A description of the baseline characteristics of the cohort has been published by in the Clinical Journal of the American Society of Nephrology . Another manuscript summarizing findings through 2012 is published in the American Journal of Kidney Disease . This study has had more than three dozen publications to date.

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

Last Updated: June 1, 2014

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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 publicAfrican AmericansSpanish-speakers, and French-speakers. NKDEP also offers educational materials for parents about the importance of testing children at risk for kidney disease and monitoring and managing high blood pressure.

NKDEP encourages African Americans to "make the kidney connection" between diabetes, high blood pressure, and kidney disease; and get tested for kidney disease. Its Kidney Sundays pdf initiative supports African American faith communities in learning about their risk for kidney disease and how to protect kidneys. With partners Chi Eta Phi Nursing Sorority, Inc. and the American Diabetes Association’s Live Empowered program, NKDEP holds national Kidney Sundays events each March that have reached over 350,000 people to date with messages of kidney  health and high blood pressure screenings. The Family Reunion Initiative coaches African American family reunion planners on how to give an educational session on kidney disease at their family reunion. To help support these kidney champions in educating others about kidney health, NKDEP recently revamped its Get Involved web section to include interactive resources and a variety of customizable content.

To expand its reach among the Hispanic community, NKDEP launched a Spanish-language website and developed the Riñones, Tesoros. Cuídalos (Kidneys, Treasures. Take Care of Them) campaign. This campaign was created in Spanish, by Spanish speakers, to provide much needed information and resources about kidney disease to the Spanish-speaking community. As part of this campaign, NKDEP has developed and is pilot testing a promotores, or community health worker, training module. The module consists of a training manual that promotores will use to familiarize themselves with kidney disease, its risk factors, and tips for maintaining kidney health; and a flipchart that they will use as part of their diabetes educational sessions.

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, Vietnamese, and French. NKDEP also offers materials for registered dietitians to use when counseling patients with CKD, including tip sheets on protein, sodium, phosphorus, and potassium management. Each of these tip sheets is also available in Spanish, while the overview brochure Eating Right for Kidney Health is offered additionally in French.

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, and distributes online and printed health information on kidney diseases and promotes publications through its website , social media, health fairs, and exhibits.

NKUDIC also responds to inquiries about kidney diseases, including information, resource, and statistical data requests, for patients, caregivers, and healthcare professionals. The website includes a consumer-friendly listing of patient-advocacy organizations. Additionally, information about kidney disease and kidney problems as they relate to diabetes is available from the NIDDK’s National Diabetes Information Clearinghouse .

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

Last Updated: June 1, 2014

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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 for a variety of health professionals to improve their knowledge and practice related to kidney disease detection, education, and treatment. Tools include the online estimated glomerular filtration rate (GFR) calculators, the Nephrology Referral Form for use by primary care providers to share patient data with the consulting nephrologist, and the Medical Nutrition Therapy Referral Form for use by primary care providers to refer patients to a registered dietitian. Reference materials include the Quick Reference on UACR/GFR fact sheet and CKD and Drug Dosing: Information for Providers. Additionally, NKDEP compiled a list of frequently asked questions on calculating eGFR and UACR to help health care providers understand why specific equations are used. 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 and resources to support dietetic educators in teaching students and interns about nutritional interventions for CKD patients. NKDEP also developed a CKD Nutrition Management Training Program that the Academy of Nutrition and Dietetics includes in their online certificate training programs 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 for urine albumin. Information is disseminated through the website, e-newsletters, and professional meetings. Additionally, NKDEP works with its Pharmacy Working Group to explore ways to increase pharmacists’ knowledge of CKD so they can participate more effectively in managing CKD patients. The group is currently developing a Continuing Education program for pharmacists on how to safely use NSAIDs in high-risk patients. NKDEP’s newest working group, the Health Information Technology Working Group, works to enable and support the widespread interoperability of data related to kidney health among software applications to optimize CKD detection and management. The group’s initial focus is incorporating CKD data in to electronic health records in a consistent and searchable manner.

In addition to the patient education materials outlined in the Public Education & Outreach section, NKDEP has materials specifically for health care providers. One such resource is the Kidney Disease Education Lesson Builder, a series of six lesson plans designed to help educators create and implement classes for counseling patients with CKD about disease management and preparing for renal replacement therapy.  NKDEP's website also features videos that model ways for health professionals 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

Last Updated: June 1, 2014

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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

Last Updated: June 1, 2014

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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 4, 2014