The National Institute of Diabetes & Digestive & Kidney Diseases

The Acute Liver Failure Study Group is collecting biosamples and information on the natural history, causes and outcomes of Acute Liver Failure in the United States. In addition to the database, a clinical trial conducted to test whether the drug N-acetylcysteine (NAC) improves outcome (survival) for patients with Acute Liver Failure not caused by acetaminophen overdose has recently been completed. Results should be available in the near future.

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

The mission of the BCBC is to facilitate interdisciplinary approaches that will advance our understanding of pancreatic islet cell development, regenerative capacity and function. The long-term goal is to develop a cell-based therapy, or treatments leading to controlled beta-cell renewal, in order to restore normal insulin production to diabetic patients.

For more information, contact Dr. Olivier Blondel, DEM, Director, Endocrine Systems Biology Program or Dr. Sheryl Sato , DEM, Director, Neurobiology of Obesity and Developmental Biology Programs

The goal of the NIAID Bioinformatics Integration Support Contract (BISC) is to advance the discovery and generation of new hypotheses for immune-mediated diseases and to further our understanding of innate and adaptive immunity by providing an integrated data repository; advanced computer support for handling scientific data; disseminating best practices in scientific data analysis including research data standards for data sharing and ontologies of immunology, disease phenotype and clinical research; and building a platform for integrated research and data sharing.

For more information, contact Dr. Lisa Spain, DEM, Director, Immunobiology of Type 1 Diabetes Program and Autoimmune Endocrine Diseases Program

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.

The Clinical Outcomes Research Initiative, CORI, provides gastrointestinal physicians, nurses and researchers with software, research data and tailor-made services aimed to advance the overall practice of endoscopy.

For more information, contact Dr. Jay Everhart, DDN, Director, Epidemiology and Data Systems Branch.

The mission of CITR is to expedite progress and promote safety in islet/beta cell transplantation through the collection, analysis, and communication of comprehensive and current data on all islet/beta cell transplants performed in North America and soon some transplants in Europe and Australia. An Annual Report that is available on the public web site. This site serves as a repository for general information concerning protocols, clinical transplantation sites, publications, and other information of interest to the general community.

For more information, contact Dr. Michael Appel, DEM, Director, Islet Biology and Transplantation Research Program.

The Diabetes Genome Anatomy Project (DGAP) represents a unique, multidimensional initiative whose goal is to unravel the interface between insulin action, insulin resistance and the genetics of type 2 diabetes. The overall goal of the project is to identify the sets of the genes involved in insulin action and the predisposition to type 2 diabetes, as well as the secondary changes in gene expression that occur in response to the metabolic abnormalities present in diabetes.

For more information, contact Dr. Olivier Blondel, DEM, Director, Endocrine Systems Biology Program.

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.

The Diabetes Prevention Type 1 (DPT-1) trial is a NIDDK-funded multi-center clinical trial to determine if treatment with beta-cell antigens can delay the onset of Type 1 Diabetes Mellitus (Type 1 DM) in non-diabetic relatives of persons with Type 1 DM. Insulin is a well characterized antigen specifically produced by beta-cells, and it was used for this purpose in the initial DPT-1 studies. The protocol for high risk subjects uses daily subcutaneous insulin injections and an annual course of intravenous insulin treatment, while the protocol for intermediate risk subjects uses daily doses of insulin administered orally.

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

A collection of statistics about specific digestive diseases, including prevalence, mortality, care delivery and cost.

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 Division of Nutrition Research Coordination at NIH provides the HNRIM database (Human Nutrition Research and Information Management), one of a collection of databases of interest to nutrition researchers, including CARDS (Computer Access to Research on Dietary Supplements), CDMRP (Congressionally Directed Medical Research Programs), CRIS (U.S. Department of Agriculture Current Research Information System).

This database provides data and tools for studying the function of DNA sequences, with an emphasis on those involved in the production of hemoglobin. It includes information about naturally-occurring human hemoglobin mutations and their effects, experimental data related to the regulation of the beta-like globin gene cluster, and software tools for comparing sequences.

For more information, contact Dr. Terry Rodgers Bishop, KUH, Director, Hematology Research Programs.

A statement of national objectives for health promotion and disease prevention for the first decade of the 21st century, the book has two overarching goals: increase quality and years of healthy life and eliminate health disparities. Specific parts of Healthy People 2010 relate to prostate and urinary bladder cancer, chronic kidney disease, and diabetes complications.

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.

Hembase is an integrated browser and genome portal designed for web-based examination of the human erythroid transcriptome. To date, Hembase contains 15,752 entries from erythroblast Expressed Sequenced Tags (ESTs) and 380 referenced genes relevant for erythropoiesis. The database is organized to provide a cytogenetic band position, a unique name as well as a concise annotation for each entry. Search queries may be performed by name, keyword or cytogenetic location. Search results are linked to primary sequence data and three major human genome browsers for access to information considered current at the time of each search. Hembase provides interested scientists and clinical hematologists with a genome-based approach toward the study of erythroid biology.

For more information, contact Dr. Terry Rodgers Bishop, KUH, Director, Hematology Research Programs.

HBDI maintains a repository of DNA and immortalized cell lines collected from 540 families of subjects with type 1 diabetes. It also houses a database that includes more than 6700 families with diabetes, related complications and other genetic diseases.

HNRIM is a searchable database of nutrition research and research training activities supported by the federal government.

The NIDDK Inflammatory Bowel Disease Genetics Consortium (IBDGC) consists of investigators from seven sites in the U.S. and Canada, who have recruited a large sample of inflammatory bowel disease patients, their relatives, and control subjects. All of the individuals in this sample have been evaluated according to a standardized protocol for clinical traits related to IBD, and have donated blood samples as a source of DNA. The IBDGC investigators are conducting genetic linkage and association studies to identify genes influencing predisposition to IBD. Phenotype, genotype and pedigree data and DNA samples will be available through the NIDDK Repositories in 2008.

For more information, contact Dr. Robert Karp, DDN, Director, Genetics and Genomics Programs in Digestive Diseases and Obesity Programs.

The dbMHC database provides an open, publicly accessible platform for DNA and clinical data related to the human Major Histocompatibility Complex (MHC).

For more information, contact Dr. Beena Akolkar, DEM, Director, Immunopathogenesis and Genetics of Type 1 Diabetes Program.

Mammalian Gene Collection (MGC) and Zebrafish Gene Collection (ZGC) The goal of the Mammalian Gene Collection (MGC), a trans-NIH initiative, is to provide full-length open reading frame (FL-ORF) clones for human, mouse, and rat genes ( http://mgc.nci.nih.gov/). The companion Zebrafish Gene Collection (ZGC) project is providing FL-ORF clones for zebrafish genes (http://zgc.nci.nih.gov).

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

The Centers are housed at outstanding academic institutions, staffed by experts in state-of-the-art technology. Researchers can ship mice to one of the four Centers and obtain on a fee-for-service basis a range of complex exams used to characterize mouse metabolism, blood composition including hormones, energy balance, eating and exercise, organ function and morphology, physiology and histology. Many tests are done in living animals and are designed to elucidate subtle to complex traits that would define models of metabolic disease.

For more information, contact Dr. Maren Laughlin, DEM, Senior Advisor for Integrative Metabolism.

The GenitoUrinary Development Molecular Anatomy Project (GUDMAP) is a consortium of laboratories working to provide the scientific and medical community with tools to facilitate research. The key components are:

• a molecular atlas of gene expression for the developing organs of the GenitoUrinary (GU) tract
• a high resolution molecular anatomy that highlights development of the GU system
• mouse strains to facilitate developmental and functional studies within the GU system
• tutorials describing GU organogenesis
• rapid access to primary data via the GUDMAP database

For more information, contact Dr. Deborah Hoshizaki, KUH, Program Director, Kidney and Urogenital Development; Kidney and Urology Regeneration and Repair; Urology Centers.

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).

The diabetes clearinghouse provides comprehensive information about diabetes 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 digestive diseases clearinghouse provides comprehensive information about digestive 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 National Gene Vector Laboratories (NGVL) are composed of an interactive group of academic production and pharm/tox laboratories whose primary goal is to provide eligible investigators with clinical grade vectors for phase I/II gene therapy clinical trials and to provide support for relevant pharmacology/toxicology studies leading up to clinical gene transfer protocols. If the application is approved, clinical grade material will be produced at no cost to the investigator.

For more information, contact Dr. Catherine McKeon, DEM, Senior Advisor for Genetic Research in Diabetes, Endocrinology and Metabolic Diseases.

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 National Kidney Disease Education Program (NKDEP) aims to increase awareness of kidney disease and its risk factors, the importance of testing those at risk, and the availability of treatment to prevent or slow the progression to kidney failure. NKDEP’s target audiences include individuals at risk, particularly those with diabetes, high blood pressure, and a family history of kidney disease, and primary care providers.

For more information, contact Dr. Andrew Narva, Director, National Kidney Disease Education Program; Senior Scientific Advisor or Ms. Eileen Newman, Associate Director, National Kidney Diseases Education Program.

This public service provides information about endocrine and metabolic diseases in easy-to-understand language: online, in booklets and fact sheets, by email, and over the phone.

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

This service provides information about certain hematologic diseases in easy-to-understand language: online, in booklets and fact sheets, by email, and over the phone. Additional hematologic information for the public is available at http://www.nhlbi.nih.gov.

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

The Nuclear Receptor Resource (NRR) Project is a collection of individual databases on members of the steroid and thyroid hormone receptor superfamily. Although the databases are located on different servers and are managed individually, they each form a node of the NRR. The NRR itself integrates the separate databases and allows an interactive forum for the dissemination of information about the superfamily.

For more information, contact Dr. Ronald Margolis, DEM, Senior Advisor, Molecular Endocrinology.

Commensurate with this directive, NURSA's goals can be distilled into two broad aims: (i) to execute research strategies designed to rapidly and efficiently elucidate those facets of orphan nuclear receptor biology we deem most critical to its understanding; and (ii) to facilitate the generation of hypotheses, design of experiments and communication of results by scientists active in this field. We anticipate that this initiative will provide a valuable service to the nuclear receptor community by developing a web-accessible bioinformatics resource, in which current and emerging data will be organized into more accessible and "user-mineable" forms.

For more information, contact Dr. Ronald Margolis, DEM, Senior Advisor, Molecular Endocrinology.

The U.S. Organ Procurement and Transplantation Network (OPTN) maintains a registry of human tissues in order to ensure the success and efficiency of the U.S. organ transplant system.

For more information, contact Dr. Thomas Eggerman, DEM, Director, Islet Transplantation Clinical Trials Program.

This multi-center, multi-national collaborative group of pediatric clinical liver centers is aimed at identifying, characterizing, and developing management strategies for infants, children, and adolescents who present with acute liver failure (ALF). In addition to a database of pediatric patients with ALF, a clinical trial is being conducted to test whether the drug N-acetylcysteine (NAC) improves outcome (survival) for patients with ALF not caused by acetaminophen overdose.

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

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. 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.