Diabetes Resources

The NIDDK Information Network (dkNET), is a search portal and information hub that helps researchers find research resources and data repositories relevant to their research and keep up to date on new tools, services and mandates to support robust and reproducible science, including funding opportunities, resource authentication and data sharing. Research resources include reagents, organisms, software tools, databases and services.

The Accelerating Medicines Partnership (AMP) is a public-private partnership between the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), 10 biopharmaceutical companies and multiple non-profit organizations to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets for therapeutics. The ultimate goal is to increase the number of new diagnostics and therapies for patients and reduce the time and cost of developing them.

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.

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.

The mission of the Collaborative Islet Transplant Registry (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, as well as some European and Australian centers.

The Common Metabolic Diseases Knowledge Portal enables browsing, searching, and analysis of human genetic information linked to common metabolic diseases and traits, while protecting the integrity and confidentiality of the underlying data.

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

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 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.

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

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).

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.

This interactive data tool allows users to explore data and technical information related to the Healthy People 2020 objectives. Specific topics of Healthy People 2020 include chronic kidney disease, diabetes complications, genomics, nutrition and weight status, and health and quality of life of older adults.

NDRI’s Human Tissue and Organs for Research Resource (HTORR) Program has been funded by the National Institutes of Health (NIH) for over 30 consecutive years to support research programs across multiple disciplines. It is through the HTORR program that NDRI provides academic biomedical investigators with donated normal and diseased human tissues and organs recovered from a diverse donor pool using customized procurement, processing, and preservation and distribution protocols.

IPD was developed in 2003 to provide a centralised system for the study of polymorphism in genes of the immune system. The IPD project was established by the HLA Informatics Group of the Anthony Nolan Research Institute in close collaboration with the European Bioinformatics Institute.

Database focused on genetics and genomics of type 1 diabetes susceptibility providing a curated and integrated set of datasets and tools, across multiple species, to support and promote research in this area. The current data scope includes annotated genomic sequences for suspected T1D susceptibility regions; genetic data; microarray data; and global datasets, generally from the literature, that are useful for genetics and systems biology studies. Summary statistics and curated data can now be downloaded from the NHGRI-EBI GWAS Catalog, ImmunoBase study links are also available.

ImmPort is a long-term, sustainable data warehouse for the purpose of promoting re-use of immunological data generated by NIAID DAIT and DMID funded investigators. ImmPort supports analysis of flow cytometry results and HLA genetic associations.

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.

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 Monogenic Diabetes Registry (also known as the MODY or Neonatal Diabetes Registry) includes two types of monogenic diabetes research: MODY (Maturity Onset Diabetes of the Young), most commonly caused by mutations in the HNF1A gene or the GCK gene, and Neonatal diabetes, most often caused by a mutation in any one of three genes: KCNJ11, ABCC8 or INS. Through this research, we hope to learn more about the number of people who have monogenic diabetes, why and how it happens, and how best to treat it.

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.

The diabetes clearinghouse provides comprehensive information about diabetes for the public: online, in booklets and fact sheets, by email, and over the phone.

National Disease Research Interchange has been at the forefront of fulfilling the biomedical research community’s human tissue needs since 1980. We work with both academic and corporate investigators worldwide to provide high-quality human biospecimens to advance biomedical research.

The goals of the National Gene Vector Biorepository and Coordinating Center (NGVB) are to provide the following: (1) maintain a database of pre-clinical pharmacology and toxicology studies (Pharm/Tox database) to support Investigational New Drug (IND) submissions to the Food and Drug Administration (FDA); (2) provide a reagent repository to support pre-clinical and clinical gene therapy studies; (3) provide biorepository and archiving services; (4) provide educational material about gene therapy; (5) provide IND-enabling testing services; and (6) conduct research related to gene therapy safety.

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.

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.

Receives blood samples collected in many different studies, and processes them to create immortalized cell lines, and DNA samples. In addition, the Genetics Repository also cryopreserves blood cells, extracts DNA from blood samples, stores samples of DNA under optimal conditions, and distributes DNA samples to qualified investigators. The Genetics Repository is one of three repositories at NIDDK Central Repository providing easy access to NIDDK data and samples.

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 NIH National Heart, Lung. and Blood Institute.

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.

The Pediatric Acute Liver Failure (PALF) Study is the first multi-center, multi-national collaborative study aimed at identifying, characterizing, and developing management strategies for infants, children, and adolescents who present with acute liver failure.

T1D Exchange is a nonprofit research organization dedicated to accelerating therapies and improving care for people living with type 1 diabetes. Through integrated programs focused on patient engagement, clinical care and science , we enable the entire T1D ecosystem to collaborate in truly novel ways.

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 an Annual data report which can be downloaded at USRDS Annual Data Report.