Publicly Available Databases to Address Clinical Aging Research Questions
Updated November, 2016
The following is a listing of selected publicly available data collections which may be useful to potential applicants for identifying observational cohorts or clinical trials from which valuable data and/or biospecimens may be analyzed to address clinical aging research questions. The NIA/DGCG subscribes fully to the NIH data sharing policy, and encourages its researchers to develop efficient and feasible data sharing plans, thus reinforcing open scientific inquiry and promoting the testing of new or alternative hypotheses and methods of analysis.
The CALERIE (Comprehensive Assessment of Long Term Effects of Reducing Intake of Energy) was a two phases trial focused on testing the effects of caloric restriction (CR) in humans. Preliminary evidence suggests that caloric CR might increase lifespan and delay or slow the progression of a wide variety of age-related morbidities and chronic conditions. The goal of CALERIE Phase I was to retrieve information to assess feasibility and safety of a longer study. CALERIE Phase 2 was a three-site randomized controlled trial in young and middle-aged non-obese, healthy men and women to assess the effects of a two-year 25% CR regimen vs. an ad libitum diet control group. In CALERIE Phase 2, CR group participants achieved 12% CR and sustained 10% weight loss over two years. Research questions addressed posed particular emphasis on the adaptive responses thought to be involved in slowing aging and protecting against age-related disease processes. A further aim was to identify potential adverse effects of CR in humans. The CALERIE database contains physiological and immune functions, physical performance, psychological outcomes, dietary records, disease risk factors, blood chemistry and hematology.
The biospecimen repository includes serum, plasma, urine, buffy coat, muscle (vastus lateralis), and fat (subcutaneous abdominal).
This was a Phase III clinical trial in 1635 sedentary persons age 70-89 at high risk for developing major mobility disability (defined as the inability to walk 400 meters). The primary aim was to assess the long-term effects of the proposed interventions on the primary outcome of major mobility disability, defined as inability to walk 400 m. The secondary aims focused on assessing the relative effects of the interventions on the following outcomes: cognitive function; serious fall injuries; persistent mobility disability; the combined outcome of major mobility disability or death; disability in activities of daily living; cardiovascular and pulmonary events; and cost-effectiveness. Tertiary aims related to assessing the relative effects of the interventions on (a) the combined outcome of mild cognitive impairment or dementia and (b) physical performance within pre-specified subgroups defined on the basis of race, gender and baseline physical performance.
The Osteoarthritis Initiative (OAI) was a multi-center, longitudinal, prospective observational study of knee osteoarthritis (OA). The overall aim of the OAI was to develop a public domain research resource to facilitate the scientific evaluation of biomarkers for osteoarthritis as potential surrogate endpoints for disease onset and progression. The OAI established and maintains a natural history database for osteoarthritis that will include clinical evaluation data, radiological (x-ray and magnetic resonance) images, and a biospecimen repository from 4796 men and women ages 45-79 enrolled between February 2004 and May 2006. Four 3.0 Tesla MRI scanners, one at each clinical center, were dedicated to imaging the knees of OAI participants annually over four years. The seven-year project recruited participants who had, and those who are at high risk for developing, symptomatic knee osteoarthritis. All data and images collected are available to researchers worldwide to help quicken the pace of biomarker identification, scientific investigation and OA drug development. Access to biospecimens will be by application to the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS).
The Multicenter Osteoarthritis Study (MOST) is a longitudinal, prospective, observational study of knee osteoarthritis (OA) in older Americans with OA disease or at increased risk of developing it. The study is comprised of two clinical centers, a data coordinating center, and an analysis center.
The overall aims of MOST are to identify novel and modifiable biomechanical factors (including physical activity-related factors), bone and joint structural factors (including those assessed by MRI of the knee), and nutritional factors that affect the occurrence and progression of OA-related knee symptoms and radiographic knee OA. Additionally, MOST investigators aim to determine whether risk factors for new disease differ from those for OA progression. The MOST cohort has been followed through 84 months with three investigative themes: mechanical risk factors, causes of knee symptoms and pain, and the long term disease trajectory of knee OA.
The Rochester Epidemiology Project (REP) is a collaboration of clinics, hospitals, and other medical facilities in Minnesota and Wisconsin and involves community members who have agreed to share their medical records for research. Using medical record information, medical scientists can discover what causes the diseases, how patients respond to medical and surgical therapies, and what will happen to patients in the future. Research studies conducted in the local community may improve the health of people both locally and globally.
The Kaiser Permanente (KP) Research Bank is a nationwide research bank that facilitates studies related to the prevention, diagnosis and treatment of disease. The KP Research Bank includes information from three sources—genetic information from a blood sample, comprehensive medical record information, and survey data on lifestyle and health issues not captured in the medical record. By combining data from seven regions nationwide reflecting the general population, the KP Research Bank has the scale to reflect population diversity. KP Research Bank may share de-identified information through secure databases–such as online database of the National Institutes of Health (NIH). Any genetic information is de-identified to protect the participant's privacy.
The SGIM Research Dataset Compendium is designed to assist investigators conducting research on existing datasets, with a particular emphasis on health services research, clinical epidemiology, and research on medical education. The detailed information provided by the SGIM compendium distinguishes it from other web-based compendia, which typically provide lists of datasets but give little information about their strengths and weaknesses and the insights of experienced users about making best use of the data.
ClinicalTrials.gov is a Web-based registry and results database that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. Most of the records on ClinicalTrials.gov describe clinical trials (interventional studies); however, ClinicalTrials.gov also contains records describing observational studies and programs providing access to investigational drugs outside of clinical trials (expanded access). Studies listed in the database are conducted in all 50 States and in 193 countries.