This list of retrospective and prospective national databases, available to REACT researchers, are quite useful for clinical trials subject identification, data linkages to planned trials, or nested studies within existing cohorts. They can be made available with permission from the PI and through sharing agreements with the responsible agency.
For additional details and access to these databases, please contact us or call (205) 934-9211.
The Arthritis Partnership with Comparative Effectiveness Researchers (AR-PoWER) Patient-Powered Research Network (PPRN), nicknamed “Arthritis Power,” brings together the Global Healthy Living Foundation (GHLF), the CreakyJoints (CJ) arthritis patient community, and rheumatology researchers from the University of Alabama at Birmingham (UAB). AR-PoWER is an innovative, nationwide research network of patients with rheumatoid arthritis and spondyloarthritis (including psoriatic arthritis and anklylosing spondylitis) that is part of PCORnet and overseen by a patient governor group. External partners include the American College of Rheumatology and CORRONA, the largest U.S. arthritis research network with data collected by rheumatologists.
This is the first electronic medical records-based network poised to integrate clinical data from the large and diverse population of HIV-infected persons in the modern HAART era. CNICS provides research infrastructure to support HIV clinical outcomes and comparative effectiveness research using data collected at one of 8 Center for AIDS Research (CFARs). As of early 2016, CNICS contained 32,237 patients; 82% male and 18% female. CNICS directly reflects the outcomes of clinical decisions and management options made daily in the care of HIV infected individuals. Unlike data collected in structured interviews or retrospective medical record review, CNICS captures a broader range of information associated with the rapidly changing course of HIV disease management. CNICS is distinguished by its ability to provide peer-reviewed-open accessto a rich and rapidly evolving clinical research platform that prospectively collects comprehensive patient data including validated outcomes, longitudinal resistance data, and detailed PROs with readily available biological specimens.
A study examining the development and determinants of clinical and subclinical cardiovascular disease and their risk factors that began in 1985-86 with a group of 5,115 black and white men and women aged 18–30 years, with follow-up examinations at years 2, 5, 7, 10, 15, 20 and 25. Data have been collected on a variety of factors believed to be related to heart disease, including blood pressure, cholesterol and other lipids, and glucose, weight and body composition as well as lifestyle factors such as dietary and exercise patterns, substance use (tobacco and alcohol), behavioral and psychological variables, medical and family history, and other chemistries (e.g., insulin).
An international study that collects, analyzes and distributes data to understand ways in which practice patterns influence the care of patients at risk for osteoporotic fragility fractures. A prospective, longitudinal, observational study of women 55 years of age and older who visited a primary care physician during the two years prior to the study.
This large, multifaceted and comprehensive study of persons with knee OA, or at high risk of disease, examines the relation of potentially important risk factors to the development or progression of a major disabling disease and to provide new insights into disease biology and potentialopportunities for prevention.
The National Exercise Clinical Trials Network (NExTNet) was established to facilitate multi-site exercise clinical trials to address these knowledge gaps in a disease-specific or population-specific manner. Currently 68 institutions from coast to coast are members of the growing network. Among NExTNet’s primary functions is to foster standardization of procedures for rigorous multi-site trials. The University of Alabama at Birmingham (UAB) Center for Exercise Medicine serves as the NExTNet Coordinating Center.
A multi-center, longitudinal, prospective observational study of knee osteoarthritis (OA), aimed at developing a public domain research resource to facilitate the scientific evaluation of biomarkers for osteoarthritis as potential surrogate endpoints for disease onset and progression. Study database includes clinical evaluation data, radiological (x-ray and magnetic resonance) images, and a biospecimen repository from 4,796 men and women ages 45-79 enrolled between February 2004 and May 2006.
Begun in July 1999. MrOS is a 7-year multi-center prospective, longitudinal, observational study examining risk factors for vertebral and all non-vertebral fractures in older men, and of the sequelae of fractures in men enrolled approximately 6000 men aged 65 and older).
A national, observational study of risk factors for stroke in adults 45 years or older. 30,239 participants were recruited between January 2003 and October 2007.
Since 1975, the UAB-SCIMS has enrolled more than 2,600 people with acute SCI in our database with 13,041 annual follow-up entries. Combined with the other centers across the country, more than 42,000 people have been enrolled with over 150,000 subsequent annual follow-up visits documented.
The Study of Aging is a prospective, observational study of a population-based sample of 1,000 community dwelling Medicare beneficiaries, stratified by sex, race, and urban/rural residence now beginning its 3rd cycle of R01 funding from NIA. The hypothesis underlying this major research initiative is that potentially modifiable factors predict mobility (life-space) trajectories associated with aging among community-dwelling African Americans and whites.
A multicenter, randomized, controlled trial that compares two strategies for treating systolic blood pressure: one targets the standard target of <140 mm Hg, and the other targets a more intensive target of <120 mm Hg. Enrollment focused on volunteers of age ≥50years (no upper limit) with an average baseline systolic blood pressure ≥130 mm Hg and evidence of cardiovascular disease, chronic kidney disease, 10-year Framingham cardiovascular disease risk score ≥15%,or age ≥75 years. The Systolic Blood Pressure Intervention Trial recruitment also targeted three pre-specified subgroups: participants with chronic kidney disease (estimated glomerular filtration rate <60 mL/min/1.73m(2)), participants with a history of cardiovascular disease, and participants 75 years of age or older. For the trial, 9,361 people from 102 clinics were recruited and randomized, including 3,331 women, 2,648 with chronic kidney disease, 1,877 with a history of cardiovascular disease, 3,962 minorities, and 2,636 ≥75 years of age.
Since 1998, the UAB TBIMS has enrolled more than 1,000 people with TBI in its database and, combined with the other centers across the country, more than 14,000 people are being followed.
A sustainable database of treatment-response data and a repository of accompanying samples. Funding for the start-up phase of TETRAD stemmed from a two-year, $3.3 million Grand Opportunity (GO) grant from the National Institute of Arthritis, Musculoskeletal, and Skin Diseases (NIAMS). The database is headquartered at UAB with the repository of samples residing in New York. UAB will spearhead the undertaking involving 10 sites nationwide. Other sites include Johns Hopkins University, University of California at San Francisco, Stanford University, and Harvard University.
A prospective, observational HIV clinical cohort study established in 1992 through support by UAB Center for AIDS Research (CFAR). It includes extremely well characterized patients (>7,000 overall, 1,700 active). In 1999, the database was expanded to include real-time collection of clinic utilization data, thereby allowing cost / expenditure analyses. In August 2004, the UAB 1917 Clinic deployed a client server-based point-of-care electronic medical record system (1917 EMR) developed within the clinic to its own specifications. The 1917 EMR system allows for real-time collection of medication, laboratory, clinical, behavioral, and health care utilization data. Over the years numerous clinical and behavioral comparative effectiveness studies have been conducted through the cohort. These include evaluation of the “efficacy vs. effectiveness” of initial ART regimens in patients treated in clinica ltrials vs. routine care.
Offering considerable experience using Medicare and Medicaid data and other large administrative databases including those from large health plans (e.g., United HealthCare, Aetna, Blue Cross Blue Shield, and the General Practice Research Database ). Expertise includes: 1) preparing applications to the CMS for permission to obtain claims data; 2) storing and managing large databases securely and efficiently; 3 ) designing studies to use the data appropriately; 4) processing and analyzing the data; and 5) conducting linkages with the National Death Index (NDI).
One of the nation’s largest healthcare providers specializing in rehabilitation, HealthSouth’s priority is to deliver high-quality patient care. Offering comprehensive rehabilitation medicine Healthsouth’s intensive approach to rehabilitation, returning patients to full strength in less than average time. In the hospital and at home, HealthSouth is focused solely on rehabilitation. With a fully integrated data warehouse and network of facility-based and home-based post-acute facilities, spanning 33 states and the Commonwealth of Puerto Rico, offer significant potential for medical rehabilitation research.
Million Veterans Program (MVP) is a national, voluntary research program funded entirely by the Department of Veterans Affairs Office of Research & Development. The goal of MVP is to better understand how genes affect health and illness in order to improve health care for Veterans. To do this, MVP will build one of the world's largest medical databases by safely collecting blood samples and health information from one million Veteran volunteers. Data collected from MVP are stored anonymously for research. MVP has extensive safeguards in-place to ensure information security and patient confidentiality are top priorities. MVP is are search program that could allow current Veterans to help transform health care, not only for themselves, but for future generations of Veterans. The Birmingham VA Medical Center affiliated with UAB is one of the most successful MVP recruitment sites.
NARCOMS is a global registry for Multiple Sclerosis research, treatment, and patient education. The Registry is an active database of over 38,000 persons with Multiple Sclerosis.We strive to develop collaboration between centers of excellence in MS throughout the world to increase knowledge, leading to improved clinical care and quality of life for MS patients.
A NINDS initiative to conduct exploratory trials in neurological conditions, receives proposals from academics, foundations and industry. All proposals are evaluated for mission relevance and institute priority by NINDS and for network feasibility by the NeuroNEXT Executive Committee (NEC). All proposals which are found to be mission relevant, feasible and of sufficient institute priority are referred to protocol working groups (PWG) for development of grant applications.
The NICHD Data and Specimen Hub (DASH) is a centralized resource for researchers to store and access de-identified data from studies funded by NICHD. It will help investigators meet the National Institutes of Health's data sharing requirements for their own studies and find study data from other investigators for secondary analyses. By supporting data sharing through DASH, NICHD aims to accelerate scientific findings and improve human health.
Since its inception in 1987, UDSMR has provided the most comprehensive rehabilitation data to the industry. UDSMR conducts a wide range of clinical and scientific research projects related to functional assessment in the field of medical rehabilitation. UDSMR also provides support to other researchers in this field via the Clinical Trials/Research Department.