The National Institute of Diabetes & Digestive & Kidney Diseases

Epidemiology Databases, Registries and Information

On July 1, 2003, The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) established Central NIDDK Repositories for biosamples and data collected in clinical studies. The purpose of the Central Repositories is to expand the usefulness of these studies by providing access to the biosamples and data to a wider research community beyond the end of the study.

For more information, contact Dr. Rebekah Rasooly, Deputy Director of the Division of Kidney, Urologic, and Hematologic Diseases.

A compilation and assessment of epidemiologic, public health, and clinical data on diabetes and its complications in the United States.

For more information, contact Dr. Catherine Cowie, DEM, Director, Diabetes Epidemiology Program.

or http://www.bsc.gwu.edu/bsc/studies/edic.html    

An observational study examining the risk factors associated with the long-term complications of type 1 diabetes. The study began in 1994 and follows the 1441 participants previously enrolled in the Diabetes Control and Complications Trial (DCCT).

For more information, contact Dr. Catherine Cowie, DEM, Director, Diabetes Epidemiology Program

The NDEP is the leading federal government public education program that promotes diabetes prevention and control. The mission of the NDEP is to reduce the morbidity and mortality associated with diabetes and its complications. The NDEP is jointly sponsored by the National Institutes of Health and the Centers for Disease Control and Prevention and over 200 partner organizations. Target audiences include people with diabetes and those at risk, including the racial and ethnic populations disproportionately affected by the disease, health care providers and payers and purchasers of health care.

For more information, contact Ms. Joanne Gallivan, Director, National Diabetes Education Program (NDEP).

or http://www.urologic.niddk.nih.gov The kidney and urologic diseases clearinghouse provides comprehensive information about bladder and renal health and disease for the public: online, in booklets and fact sheets, by email, and over the phone.

For more information, contact Ms. Kathy Kranzfelder, OCPL, Director, NIDDK Information Clearinghouses.

The United States Renal Data System (USRDS) is a national data system that collects, analyzes, and distributes information about chronic kidney disease and end-stage renal disease (ESRD) in the United States. The USRDS publishes and Annual data report which can be downloaded at http://www.usrds.org/adr.htm. The missions of the USRDS are: (1) To characterize the total renal patient population and describe the distribution of patients by socio-demographic variables across treatment modalities; (2) To report on the incidence, prevalence, mortality rates, and trends over time of renal disease by primary diagnosis, treatment modality and other variables; (3) To develop and analyze data on the effect of various modalities of treatment by disease and patient group categories; (4) To identify problems and opportunities for more focused special studies of renal research issues; (5) To conduct cost effectiveness studies and other economic studies of ESRD; and (6) To make the data available to investigators, and by supporting investigator-initiated projects, to conduct biomedical and economic analyses of ESRD patients. For more information, contact Dr. Paul Eggers, KUH, Director, Kidney and Urology Epidemiology Programs, or Dr. Lawrence Agodoa, KUH, Director, Office of Minority Health Research Coordination.

For more information, contact Dr. Lawrence Agodoa, KUH, Director, Office of Minority Health Research Coordination or Dr. Paul Eggers, KUH, Director, Kidney and Urology Epidemiology Programs.

Urologic diseases cover a wide range of conditions, symptoms, and problems that include such diverse diagnoses as cancer, pelvic pain, sexual dysfunction, urinary incontinence, kidney stones, and benign prostatic hyperplasia (BPH). To remedy this lack of information, NIDDK initiated the Urologic Disease in America (UDA) project. The UDA compendium delineates the changes in the epidemiology, health economic impact, and practice patterns for the diseases currently included within the scope of practice of the specialty of urology, analyzed retrospectively over a ten-year period. The UDA compendium consists of data tables annotated in chapters that amplify the data analyses. The objectives of the UDA project include secondary data analyses of the following topics: (1) changes in the overall health care burden for individual urologic diseases; (2) changes in physician practice patterns for each urologic disease; (3) changes in demographics of persons with urologic disease; (4) the impact of specific urologic diseases, especially diseases of the prostate, on the minority populations of the U.S.; (5) documentation of new and evolving therapies for urologic disease and their potential impact on treatment outcomes and health care costs. The resultant compendium can be found at the above web address. In addition to updating the original compendium, the second phase of the UDA is to focus less on descriptive analyses and more on analytical outcomes analyses, and it will also attempt to increase involvement of the urologic community in analytical activities.

For more information, contact Dr. Paul Eggers, KUH, Director, Kidney and Urology Epidemiology Programs or Dr. Leroy Nyberg, KUH, Director, Urology Programs.

Epidemiology Multicenter Clinical Research

African Americans are disproportionately afflicted with end-stage renal disease (ESRD). Although better management of high blood pressure has led to a decline in the number of people who develop strokes and heart disease, the number of people developing kidney failure has increased. In 1990, the NIDDK launched an initiative to investigate the underlying cause of ESRD and to study mechanisms that could slow progression of hypertensive kidney disease in African Americans. The clinical trial was initiated to investigate whether a specific class of antihypertensive drugs (beta-adrenergic blockers, calcium channel blockers, or angiotensin converting enzyme inhibitors) and/or the level of blood pressure would influence progression of hypertensive kidney disease in African Americans. The pilot study started in 1992 with its full-scale trial from 1995 to 2002 followed by a current Continuation of AASK Cohort Study. Only patients who were previously in the randomized trial are eligible for the cohort study. The primary goal of the Continuation of AASK Cohort Study is to investigate the environmental, socio-economic, genetic, physiologic, and other co-morbid factors that influence progression of kidney disease in a well-characterized cohort of African Americans with hypertensive kidney disease.

For more information, contact Dr. Lawrence Agodoa, KUH, Director, Office of Minority Health Research Coordination.

The Boston Area Community Health (BACH) Survey is an epidemiologic study being conducted in the Boston metropolitan area to examine the prevalence of symptoms for health problems such as interstitial cystitis, urinary incontinence, benign prostatic hyperplasia, prostatitis, hypogonadism, and sexual function. Of interest to the survey are health disparities and inequalities. BACH is especially concerned with lack of adequate health insurance, lack of access to adequate medical care, and how these problems influence patterns of disease. The study also focuses on social determinants of disease that are over and above the contribution of individual characteristics and risk factors. To achieve a randomly sampled population, four neighborhoods were divided into 12 strata and from them investigators selected census blocks. Households were then randomly selected from the census blocks and sampled to identify eligible study participants.

For more information, contact Dr. Paul Eggers, KUH, Director, Kidney and Urology Epidemiology Programs or Dr. John Kusek, KUH, Senior Scientific Advisor for Clinical Trials or Dr. Leroy Nyberg, KUH, Director, Urology Programs.

The Diabetic Retinopathy Clinical Research Network (DRCR.net) is a collaborative network led by the National Eye Institute (NEI) dedicated to facilitating multicenter clinical research of diabetic retinopathy, diabetic macular edema and associated conditions. The DRCR.net supports the identification, design, and implementation of multicenter clinical research initiatives focused on diabetes-induced retinal disorders. Principal emphasis is placed on clinical trials, but epidemiologic outcomes and other research may be supported as well.

or http://www.bsc.gwu.edu/bsc/studies/edic.html    

An observational study examining the risk factors associated with the long-term complications of type 1 diabetes. The study began in 1994 and follows the 1441 participants previously enrolled in the Diabetes Control and Complications Trial (DCCT).

For more information, contact Dr. Catherine Cowie, DEM, Director, Diabetes Epidemiology Program.

The Interstitial Cystitis Clinical Trials Group, established by the NIDDK, has conducted clinical trials research into novel treatments for IC and studied potential biomarkers for the disease in urine. Recently, this group has been expanded to form the Interstitial Cystitis Clinical Network (ICCRN) to further assess potential new treatments for IC and foster basic research of IC and bladder disorders.

For more information, contact Dr. Paul Eggers, KUH, Director, Kidney and Urology Epidemiology Programs.

The Longitudinal Assessment of Bariatric Surgery is a National Institutes of Health (NIH)-funded consortium of six clinical centers and a data coordinating center working in cooperation with NIH scientific staff to plan, develop, and conduct coordinated clinical, epidemiological, and behavioral research in the field of bariatric surgery.

For more information, contact Dr. Carolyn Miles, DDN, Director, Clinical Obesity and Nutrition Program.

The MaGIC study will investigate several hundred families with two or more blood relatives with interstitial cystitis in order to understand the molecular genetic basis of this condition.

For more information, contact Dr. Rebekah Rasooly, Deputy Director of the Division of Kidney, Urologic, and Hematologic Diseases.

The Nonalcoholic Steatohepatitis Clinical Research Consortium (NASH CRN) is a collaborative group of eight adult and pediatric clinical research centers and a data coordinating center created to focus on the etiology, contributing factors, natural history, complications, and therapy of nonalcoholic steatohepatitis. A long term database and a two clinical trials, one in adults and one in children, are ongoing.

For more information, contact Dr. Patricia Robuck, DDN, Program Director for Clinical Trials in Digestive Diseases and Nutrition Program.

SEARCH is a multi-center study that identifies cases of diabetes in children/youth < 20 years of age in six geographically dispersed populations that encompass the ethnic diversity of the United States.

For more information, contact Dr. Barbara Linder, DEM, Senior Advisor for Childhood Diabetes Research.

The overarching purpose of this proposal (Grant 5U01DK066134-03) is to address a set of critical questions about the etiology of interstitial cystitis (IC) using multivariate data from a large population-based classical twin study. Despite ongoing research, IC remains a controversial entity for two critical reasons. First, the validity of the case definition remains uncertain. There are few data that address a historically important validator--the degree to which IC results from genetic and/or environmental factors. Second, IC is often comorbid with one or more additional physical disorders and yet the causes of comorbidity are uncertain. Taken together, these two sets of unanswered questions contribute significantly to the controversies that continue to surround IC. Moreover, the strong female predominance of IC has been amply documented but is not well understood. To address these fundamental issues, it is proposed to conduct a twin study of IC in the population-based Swedish Twin Registry (STR). This study is part of the Interstitial Cystitis Genetics Consortium. The other part is the Maryland Genetics of Interstitial Cystitis (MaGIC)   study.

For more information, contact Dr. Rebekah Rasooly, Deputy Director of the Division of Kidney, Urologic, and Hematologic Diseases.

Epidemiology Basic Research Networks

On July 1, 2003, The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) established Central NIDDK Repositories for biosamples and data collected in clinical studies. The purpose of the Central Repositories is to expand the usefulness of these studies by providing access to the biosamples and data to a wider research community beyond the end of the study.

For more information, contact Dr. Rebekah Rasooly, Deputy Director of the Division of Kidney, Urologic, and Hematologic Diseases.

NMRI is a communication network of current and potential biomedical research investigators and technical personnel from traditionally under-served communities: African American, Hispanic American, American Indian, Alaskan Native, Native Hawaiian, and other Pacific Islanders. The major objective of the network is to encourage and facilitate participation of members of underrepresented racial and ethnic minority groups in the conduct of biomedical research in the fields of diabetes, endocrinology, metabolism, digestive diseases, nutrition, kidney, urologic and hematologic diseases. A second objective is to encourage and enhance the potential of the underrepresented minority investigators in choosing a biomedical research career in these fields. An important component of this network is promotion of two-way communications between network members and the NIDDK.

For more information, contact Ms. Winnie Martinez, Program Analyst, Office of Minority Health Research Coordination

Epidemiology Reagents

On July 1, 2003, The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) established Central NIDDK Repositories for biosamples and data collected in clinical studies. The purpose of the Central Repositories is to expand the usefulness of these studies by providing access to the biosamples and data to a wider research community beyond the end of the study.

For more information, contact Dr. Rebekah Rasooly, Deputy Director of the Division of Kidney, Urologic, and Hematologic Diseases.

Epidemiology Services

On July 1, 2003, The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) established Central NIDDK Repositories for biosamples and data collected in clinical studies. The purpose of the Central Repositories is to expand the usefulness of these studies by providing access to the biosamples and data to a wider research community beyond the end of the study.

For more information, contact Dr. Rebekah Rasooly, Deputy Director of the Division of Kidney, Urologic, and Hematologic Diseases.

Epidemiology Standardization Programs

Epidemiology Tissues, Cells, Animals

On July 1, 2003, The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) established Central NIDDK Repositories for biosamples and data collected in clinical studies. The purpose of the Central Repositories is to expand the usefulness of these studies by providing access to the biosamples and data to a wider research community beyond the end of the study.

For more information, contact Dr. Rebekah Rasooly, Deputy Director of the Division of Kidney, Urologic, and Hematologic Diseases.

Epidemiology Useful Tools