Table 1. Alzheimer's Disease Data.
| Alzheimer's Disease Data Center, Core or Consortium | Host Institution for Data | Database or Data Characteristics |
|---|---|---|
| National Institute of Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS)/Alzheimer's Disease Genetics Consortium (ADGC) | National Institute of Aging and the University of Pennsylvania | A national genetics data repository in order to facilitate access by qualified investigators to genotypic data for the study of the genetics of late-onset Alzheimer's disease. |
| Alzheimer's Disease Neuroimaging Initiative | University of California San Francisco | Comprised of neurocognitive, imaging, genetic and demographic longitudinal subject data from 58 sites in North America since 2004. |
| French National Alzheimer's Database (BNA) | Nice University Hospital in France | Registers all medical acts performed by memory units and independent specialists where subject data is collected at several hundred memory centers all over France |
| Integrated NeuroDegenerative Disease database (INDD) | University of Pennsylvania | Integrated database of multiple, aging related neurodegenerative diseases such as Alzheimer's disease, Parkinson's disease, amyotrophic lateral sclerosis, and frontotemporal lobar degeneration |
| AlzPharm and BrainPharm | Yale University | Database(s) of drugs for the treatment of different neurological disorders. AlzPharm is the “semantic” representation of BrainPharm i.e., it actually represents knowledge and relationships in the data. |
| COMET-AD | Indian University and the State of Indiana | Indiana state-wide registry of adverse events with Alzheimer's disease drugs. |
| Layton Aging and Alzheimer's Disease Center(LAADC) | Oregon Health and Sciences University | Longitudinal research database of over 3000 subjects with clinical, neuroimaging, biomarkers, and neuropathology data |
| neuGRID for you (N4U) | European consortium of multiple partners | Grid network of European Alzheimer's disease data |
| Dominantly Inherited Alzheimer's Network (DIAN) | Washington University at St. Louis | Focused on Autosomal Dominant Alzheimer's Disease (ADAD) drug trials |
| National Alzheimer's Coordinating Center (NACC) | University of Washington | Data is collected from the 27 NIA-funded Alzheimer's Disease Centers (ADCs) across the United States, NACC has developed and maintains a large relational database of standardized clinical and neuropathological research data. |
| Australian Imaging Biomarkers and Lifestyle Flagship Study of Ageing (AIBL) | Commonwealth Scientific and Industrial Research Organization (CSIRO) Australia and partner universities | 4.5+year prospective longitudinal study of cognition. Large-scale cohort study: 1000+ participants (minimum age 60 years). Patients with Alzheimer's disease (AD), mild cognitive impairment (MCI) and healthy volunteers. All data is collected at two centers (40% subjects from Perth in Western Australia, 60% from Melbourne, Victoria). |
| European Medical Information Framework (EMIF) | Consortium of European universities, research organizations, pharmaceutical companies, public bodies and non-profit groups | EMIF-AD is the Alzheimer's Disease focused thrust of this effort, where the goals of EMIF-AD include (1) Setting up a large data repository of patient data to allow biomarker discovery studies within the EMIF. (2) Linking data from research cohorts to electronic health registry data. (3) Identifying new potential targets for AD drug development using genomics and proteomics approaches in presymptomatic and prodromal AD. |
| Framingham Heart Study (FHS) | Boston University | Database of genetic, phenotypic and biomarkers data from the Framingham Heart Study. |
| Brain Health Registry (BHR) | University of California San Francisco and partners | Expected to soon make available an Investigator Portal that provides Alzheimer's Disease researchers with access to de-identified brain health registry data. |
| Texas Alzheimer's Research Care Consortium (TARCC) | University of Texas San Antonio Health Sciences Center and partners. | Database of longitudinal study data from over 2000 subjects in Texas. |
| Aged Brain Sys Bio (ABSB) | French National Institute of Health | Expected to generate novel resources for the European ageing research scientific community, including a novel open-access database |
| Alzheimer's Preventative Initiative/Banner Alzheimer's Institute (API/BAI) | Banner Alzheimer's Institute in Phoenix, Arizona | Data from the Alzheimer's Prevention Initiative including the ‘Columbia Study’ |
| Women's Healthy Aging Project (WHAP) | University of Melbourne | A prospective, longitudinal, epidemiological study of 438 Australian women that has spanned two decades |
| The Three City Study (3C) | The consortium of the three cities of Bordeaux, Dijon and Montpellier, France. | A population-based longitudinal study of the relation between vascular diseases and dementia in persons aged 65 years and older. A total of 9,294 participants (3,649 men and 5,645 women) were recruited from three French cities. |
| Swedish Dementia Registry | The registry database, SveDem, is maintained at the Uppsala Clinical Research Center in Sweden | Includes dementia and demographic information of 28, 742 followed-up as of October 2014. 95% of all memory clinics in Sweden are currently participating in SveDem. |
| OPTIMA | University of Oxford | Database of neuropsychological assessments, brain scans, blood samples, cerebrospinal fluid samples (CSF), physical examination data and histopathological information following brain donation |
| Wisconsin Registry for Alzheimer's Prevention (WRAP) | University of Wisconsin | Includes Over 1500 participants |
| Dallas Lifespan Brain Study (DLBS) | University of Texas at Dallas | Focuses on the study of healthy adults and is playing a significant role in understanding the aging mind. There are 350 adults, 50 from each decade from 20 to 89 tested thoroughly for characterize cognition, brain structure and function across the adult lifespan |
| European Alzheimer's Disease Initiative (EADI) | Central repository of data across seven academic sites of the European Alzheimer's Disease Consortium (EADC) | |
| Neuroanatomical Database of Normal Japanese Brains | Tohuko University | A dataset on 1547 normal subjects between the ages of 16 and 79 years has been collected. |
| Canadian Longitudinal Study on Aging | Consortium of 26 universities across Canada | Consists of a national, stratified, random sample of 50,000 Canadian women and men aged 45 to 85 years at the time of recruitment. Participants will undergo repeated waves of data collection at three-year intervals and will be followed for at least 20 years. |
| AlzGene | Alzforum, operated by the Biomedical Research Forum (BRF) LLC (in Cambridge, MA) | The goal of the AlzGene database is to serve as a comprehensive, unbiased, publicly available and regularly updated field-synopsis of published genetic association studies performed on AD phenotypes. The database includes data from over 1600 AD gene studies. Over 300 AD gene candidates have been systematically subjected to meta-analysis and the results showing over 40 AD-associated genes are publicly available on the AlzGene.org website. |