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MESA / Multi-Ethnic Study of Atherosclerosis
Provides a repository dedicated to understanding of the pathogenesis of atherosclerosis and other cardiovascular disease (CVD). MESA contains the results of a study leans on a sample of over 6500 peoples. It aims to determine relations of newly identified factors with subclinical disease and their incremental predictive value over established risk factors as well as characteristics related to progression of (i) subclinical CVD to clinical CVD, (ii) subclinical CVD.
RAMEDIS / Rare Metabolic Diseases
Provides a resource for storing, maintaining and publishing mutation data on rare metabolic diseases. RAMEDIS is an information system for inherited diseases based on individual case reports. Users can create new case reports and submit a comprehensive information describing the case report, including mutation data, symptoms, laboratory findings, therapy, pictures and literature references. The database allows co-operative studies and can lead to advances in epidemiology, combining molecular and clinical facts, and generating rules for therapeutic intervention and identification of new diseases.
RDCRN / Rare Diseases Clinical Research Network
Provides up-to-date information for patients and assists in connecting patients with advocacy groups, expert doctors, and clinical research opportunities. RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. It has proven to be an extremely effective research model to maximize research investigator participation, initiating clinical trials, facilitating patient recruitment with established research partnerships with patient advocacy groups at multiple research sites around the world.
USRDS / United States Renal Data System
Collects, analyzes, and distributes information about chronic kidney disease (CKD) and end-stage renal disease (ESRD). USRDS characterizes the transition to the new Centers for Medicare & Medicaid Services Prospective Payment System, which bundles into a single payment several integral components of dialysis care. Its main strengths are its size and representativeness, nearly complete inclusion of the US end-stage renal disease population, and linkage to Medicare claims.
KORA / Kooperative Gesundheitsforschung in der Region Augsburg
Provides recent as well as existing studies with their respective data and biosamples. KORA is a research platform that serves as a basis for population-based epidemiological studies on different topics like diabetes, cardio-vascular and lung diseases. This resource also provides KORA-gen, an open resource for external researchers. It offers access to information about available population controls for genetic studies as well as provision of DNA samples, genotypic and phenotypic data. As a consequence, this integrated database includes information from more than 20 000 participants which belong to one or more of over 15 studies.
SEER / Surveillance, Epidemiology, and End Results
Gathers data about cancer incidence and survival collected all around the United States of America between 1973 and 2014. SEEM is an annually updated database that provides information about the population displayed by various characteristics such as age or year of diagnosis accompanied by features like primary tumor site and first course of treatment. The registries can be downloaded by requesting a signed SEER Research Data Agreement form.
OCDD / Obesity and Co-morbid Disease Database
Allows exploration of molecular connections of obesity and its comorbid diseases. OCDD was built by applying a computational pipeline that performs both text mining on literature databases and biological network mining on systems biology databases. This database is useful to understand the complexity of developing comorbid diseases in molecular level. It provides functional annotation of common genes, gene interaction networks and key driver analyses.
ANZDATA / Australia and New Zealand Dialysis and Transplant Registry
Collects a wide range of statistics which relate to the outcomes of treatment of those with end stage renal failure. ANZDATA includes coverage of both dialysis and transplantation in Australia and New Zealand since the inception of these therapies, and has maintained continuous coverage since that time with inclusion of all kidney transplant activity in both countries. The database is used for analyses of interest and benefit to the data contributors has been the creation of a network of working groups, comprising nephrologists and surgeons and renal nurses with interest and expertise in using the data.
ANZOD / Australia and New Zealand Organ Donation Registry
Continues to record and report on organ donation within Australia and New Zealand. ANZOD relates to deceased solid-organ donors, but is similar—description of activity levels and characteristics of solid-organ donors at a national, state and hospital level. It collects data from organ donor coordinators, who report a range of data about organ donors. This includes demographics (age, gender, ethnicity), and a variety of comorbidities and information about function of key organs.
ABCD / Adolescent Brain Cognitive Development
Houses all data generated by the longitudinal study of Adolescent Brain Cognitive Development. ABCD is a research initiative sponsored by the Collaborative Research on Addiction at NIH (CRAN) partnership. This repository will store data generated by ABCD investigators, serve as a collaborative platform for harmonizing those data, and eventually share those data with qualified researchers. Investigators will measure brain maturation in the context of social, emotional, and cognitive development, as well as a variety of health outcomes.
UKRR / UK Renal Registry
Offers one of the very few high quality clinical databases open to requests from researchers. UKRR collects, analyses and reports on data from 71 adult and 13 paediatric renal centers. The data are published annually in the UK Renal Registry Annual Report. The report is used by a variety of stakeholders but its principle purpose is to act as a source of data for audit and benchmarking against the quality of care standards created by the Renal Association and other organisations.
JADE / Joint Asia Diabetes Evaluation
Obsolete
Captures clinical characteristics of all patients enrolled in the Joint Asia Diabetes Evaluation programme. JADE incorporates templates for metabolic and diabetes complication screening, validated risk equations to estimate 5-year probability of major clinical events and built-in protocols to provide decision support to physicians and patients. Nine countries/areas across Asia have enrolled patients into the JADE programme as a quality improvement initiative and for the establishment of the Asia Diabetes Database.
NNTC / National NeuroAIDS Tissue Consortium
Obsolete
Compiles information about antemortem and postmortem tissues and fluids. NNTC collects experimental data as well as Nervous Systems (NS) and peripheral nervous systems (PNS) signs and symptoms or comorbid conditions, splitted in six main categories. Users can browse among studies using the browser panel by entering a free-text term, or by choosing from a combination of 76 tissue types, 25 measurement types and 38 different technologies.
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