§ of studies, databases, and other resources related to dementia and aging (n=150), 2013 October
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Table 1. Working Inventory § of studies, databases, and other resources related to dementia and aging (n=150), 2013 October
Study/Database/Project
Location
Is project still active* (Y/N)?
Study/database/resource type
A
Adult Changes in Thought (ACT)-Group Health Cooperative (GHC)
United States
Y
Longitudinal; Prospective
Adult Children Study (ACS), Memory Aging Project
United States
Y
Longitudinal; Prospective
Age-Related Neurodegenerative Diseases in Micronesia (ARNDM)/Guam Dementia Project: Parkinson's Dementia Complex (PDC) of the Chamorro on Guam
Guam
N (1997-2002)
Longitudinal; Prospective; Tissue samples
AgeNet (Aging Research Network)
Canada
Y
Collaborative ; Education; Funds research
AGES Reykjavik Study: The Reykjavik Study of Healthy Aging for the New Millennium
Iceland; United States
N
Genetics
Aging Demographics and Memory Study (ADAMS), part of the Health and Retirement Study (HRS)
United States
N
Population-based
Alzheimer Disease & Frontotemporal Dementia Mutation Database (AD & FTDMDB)
Belgium
Y
Database; Genetics
Alzheimer Europe Network
Europe
Y
Collaborative; Information resource
Alzheimer's Disease Genetics Consortium (ADGC)
United States
Y
Collaborative; Genetics
Alzheimer's Disease Patient Registry (ADPR)
United States
Y
Database; Registry
Alzheimer's Diseases Without Borders (ADWIBO)
Italy
Y
Database
Alzheimer’s Disease Cooperative Study (ADCS)
United States
Y
Alzheimer's Disease Prevention Initiative; Clinical research ; Drug discovery, development, and testing
Alzheimer’s Disease Neuroimaging Initiative (ADNI)
United States
Y
Collaborative; Longitudinal; Neuroimaging; Prospective; Database/Data sharing
Alzheimer’s Disease Research Centers (ADRC), 29 Centers
United States
Y
Basic, clinical, and behavioral research sites; Network; Collaborative Studies
Alzheimer’s Prevention Initiative (API)
United States
Y
Biomarkers; Clinical research; Drug discovery, development, and testing ; Neuroimaging
Assessment of Health Economics in Alzheimer's Disease (AHEAD) Model
United States
N/A
Methods
Australian Imaging, Biomarker and Lifestyle Flagship Study of Ageing (AIBL) / Australian Initiative (COSMIC) - Australian ADNI
Australia
Y
Biomarkers; Collaborative; Longitudinal; Neuroimaging; Prospective; World Wide Alzheimer's Disease Neuroimaging Initiative (WW-ADNI)
The Alzheimer's Disease Genetics Initiative: The Multiplex Family Study
United States
Y
Clinical research; Genetics; Longitudinal
B
Baltimore Longitudinal Study on Aging (BLSA)
United States
Y
Longitudinal; Observational; Prospective
Barcelona-Pittsburgh Project
Spain; United States
Y
Alzheimer’s Education Center; Clinical; Collaborative; Longitudinal; Research Center
Biomarkers for Older Controls at Risk for Dementia (BIOCARD)
United States
Y
Biomarkers; Longitudinal; Neuroimaging
Bioresource Research Impact Factor (BRIF)
Europe
Y
Methods; Tool; Workgroup
Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative/Brain Activity Map Project
United States
Y
Collaborative; Neuroimaging; Technology
Bronx Aging Study (BAS)
United States
N
Longitudinal; Prospective
The Betula Project
Sweden
Y
Longitudinal; Prospective
C
Cache County Study on Memory Health and Aging (CCMS)
United States
N (1995-2012)
Longitudinal; Prospective
Cambridge Brain Bank (CBB)
United Kingdom
Y
Controls; Data repository; Human tissue
Canadian Longitudinal Study on Aging (CLSA)
Canada
Y
Longitudinal; Prospective
Canadian Study of Health and Aging (CSHA)
Canada
N (1991-2001)
Longitudinal; Prospective
Coronary Artery Risk Development in Young Adults (CARDIA)
United States
Y
Biomarker; Collaborative; Data sharing; Longitudinal; Prospective; Multicenter
Cardiovascular Health Cognition Study (CHCS)
United States
N (1989-1999)
Longitudinal; Population-based ; Prospective
Cardiovascular Risk Factors, Aging and Dementia (CAIDE)
Finland
Y
Longitudinal; Prospective
Chicago Health and Aging Project (CHAP)
United States
Y
Longitudinal; Population-based; Prospective
China-ADNI
China
Y
Collaborative; Neuroimaging
Chongqing City, China cohort
China
N
Longitudinal; Prospective
Clinical Practice Research Datalink (CPRD)
United Kingdom
Y
Database; Intervention(s); Observational;
Cognition, Brain, and Aging (COBRA) Project
Sweden
Y
Longitudinal; Neuroimaging; Prospective
Cognitive and Emotional Health Project (CEHP): The Healthy Brain
United States
Y
Collaborative; Current Aging Research Status; Database;
Cognitive Assessment Toolbox (CAT)
United States
Y
Information resource; Tools
Cohorts for Heart and Aging in Genomic Epidemiology (CHARGE), neurology subgroup
United States
Y
Collaborative; Genetics
Conselice Study of Brain Aging (CSBA)
Italy
N
Population-based; Prevalence study
Consortium of Canadian Centers for Clinical Cognitive Research (C5R)
Canada
Y
Clinical research; Collaborative; Drug discovery, development, and testing
Consortium to Establish a Registry for Alzheimer’s Disease (CERAD)
United States
Y
Autopsy; Collaborative; Controls; Data standardization; Registry
D
Deep South Resource Center for Minority Aging Research
United States
Y
Career development; Collaborative; Funds research; Resource Center for Minority Aging Research (RCMAR)
Dementia Engagement and Empowerment Project (DEEP)
United Kingdom
Y
Collaborative; Support
Dementia in Swedish Twins (HARMONY)
Sweden; United States
Y
Collaborative; Longitudinal; Prospective
Development of Screening Guidelines & Criteria for Pre-dementia Alzheimer’s Disease (DESCRIPA)
Europe
N
Clinical criteria; Collaborative; Meta-analysis; Population-based; Prospective; Screening guidelines
Diagnostic Enhancement of Confidence by an International Distributed Environment (DECIDE)
Italy
N (2010-2012)
Diagnostics; Information resource; Tools
Dominantly Inherited Alzheimer Network (DIAN)
Australia; Germany; United Kingdom; United States
Y
Collaborative; Genetics
German Center for Neurodegenerative Diseases: Deutsche Zentrum Neurologische Erkagardin (DZNE)
Germany
Y
Clinical research; Health care; Population-based; Research center
E
Established Populations for Epidemiologic Studies of the Elderly (EPESE) - (East Boston, Iowa, New Haven, North Central North Carolina) / Hispanic EPESE
United States
N
Biomarkers; Longitudinal; Prospective
Eugeria Longitudinal Study of Cognitive Aging
France
N
Longitudinal; Prospective
European Alzheimer's Disease Consortium (EADC)
Europe
Y
Collaborative; Network
European Alzheimer's Disease Initiative (EADI)
Europe
Y
Collaborative; Genetics
European Community Concerted Action on the Epidemiology and Prevention of Dementia Group (EURODEM)
Europe
N
Collaborative; Research
European Dementia Prevention Initiative (EDPI)
Europe
Y
Collaborative; Dementia prevention trials
European Diffusion Tensor Imaging Study in Dementia (EDSD)
Europe
Y
Clinical research; Imaging; Multicenter; Technology
European Huntington’s Disease Network/CHDI/Huntington’s Disease Initiative
Europe
Y
Drug discovery, development, and testing; Funds research; Research organization
European Medical Information Framework (EMIF)
Europe
Y
Database
European Prospective Investigation into Cancer and Nutrition - Cognition Consortium (EPIC-COG)
Europe
Y
Biobank; Collaborative; Genetics; Longitudinal; Multicenter; Prospective
F
Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER)
Sweden
Y
Intervention; Longitudinal; Multicenter; Prospective
Framingham Heart Study (Original cohort, offspring, omni generations 1 and 2, and generation 3)
United States
Y
Longitudinal; Prospective
French National Alzheimer Plan Cohort (MEMENTO)
France
Y
Multicenter; Prospective; Observational
G
Genetic and Environmental Risk Factors for Alzheimer Disease Among African Americans (GenerAAtions) Study
United States
N
Genetics; Longitudinal
Genetic and Environmental Risk in Alzheimer's disease (GERAD) Consortium
United Kingdom
Y
Collaborative; Genetics; International Genomics of Alzheimer's Project (IGAP)
German Study on Aging, Cognition and Dementia in Primary Care Patients (AgeCoDe)
Germany
Y
Longitudinal; Multicenter; Prospective
Global Alzheimer’s Association Interactive Network (GAAIN)
United States
Y
Collaborative; Data sharing
The German Dementia Competence Network
Germany
Y
Collaborative; Research support; Resource sharing
The Ginkgo Evaluation of Memory (GEM) Study
United States
N
Clinical research
H
Healthy Aging in Neighborhoods of Diversity across the Life Span (HANDLS)
United States
Y
Biomarkers; Longitudinal; Prospective
Healthy Aging Through Internet Counseling in the Elderly (HATICE)
Europe
Y
Collaborative; European Dementia Prevention Initiative (EDPI); Intervention; Randomized Controlled Trial; Technology
Dynamics of Health , Aging, and Body Composition (Health ABC) Study
United States
Y
Biomarker; Collaborative; Clinical research; Longitudinal; Observational; Prospective
H70
Sweden
N (1971-2012)
Longitudinal; Population-based; Prospective
HARMONY Study - The Study of Dementia in Swedish Twins
Sweden
Y
Longitudinal; Prospective; Registry
Health and Retirement Study (HRS)
United States
Y
Cross-sectional; Longitudinal panel
Healthy Aging and Senile Dementia (HASD)
United States
N
Longitudinal; Prospective
Hisayama Study
Japan
Y
Autopsy; Longitudinal; Prospective
Honolulu-Asia Aging Study (HAAS)/Honolulu Heart Program (HHP)
United States
N
Autopsy; Longitudinal; Prospective
Human Brain Project (HBP)
Europe
Y
Collaborative; Neuroinformatics; Technology
The Halcyon Project
United Kingdom
Y
Information resource
I
Indianapolis-Ibadan Dementia Project / Yoruba Nigerians
United States
Y
Longitudinal; Population-based; Prospective
Indo-US Cross-National Dementia Epidemiology Study
India; United States
N
Collaborative
Insight into Determinants of Exceptional Aging and Longevity (IDEAL) Study
United States
Y
Longitudinal; Prospective
Instruments to Detect Cognitive Impairment in Older Adults
United States
Y
Database; Information resource
Integrative Analysis of Longitudinal Studies on Aging (IALSA)
Canada
Y
Collaborative; International; Research network
Israel Diabetes and Cognitive Decline Study
Israel
N
Longitudinal; Neuroimaging; Prospective
Israeli Registry for Alzheimer’s Prevention (IRAP)
Israel
Y
Longitudinal; Observational; Prospective
Italian ADNI (I-ADNI)
Italy
Y
Collaborative; Neuroimaging; WW-ADNI
Italian Longitudinal Study on Ageing (ILSA)
Italy
N
Longitudinal; Population-based; Prospective
The InCHIANTI Study (Invecchiare in Chianti, aging in the Chianti area)
Italy
Y
Data sharing; Longitudinal; Population-based; Prospective
The International Genomics of Alzheimer's Project (IGAP)
Europe/EADI; United States/ADGC and CHARGE; United Kingdom/GERAD
Y
Collaborative; Genetics; International
K
Kaiser Permanente Medical Care Program of Northern California (KPNC)
United States
Y
Electronic medical records; Retrospective
Kame Project
United States
N (1990-2003)
Longitudinal; Prospective
Kungsholmen Project
Sweden
N (1987-2000)
Longitudinal; Prospective
L
Laboratory of Neuroimaging (LONI)
United States
Y
ADNI; Collaborative; Data sharing; Neuroimaging
Latino Aging Research Resource Center (LARRC)
United States
Y
Collaborative; Information resource; RCMAR
Leisure World Cohort Study (LWCS)
United States
Y
Longitudinal; Population-based; Prospective
Longitudinal Study of Drivers with Dementia
United States
N (2001-2005)
Longitudinal; Prospective
M
Manitoba Study of Health and Aging (MSHA)
Canada
N
Longitudinal; Population-based; Prospective
Mayo Clinic Study of Aging (MCSA)
United States
Y
Longitudinal; Population-based; Prospective
Memory and Aging Project (MAP) - at Rush University Medical Center ADC
United States
N
Longitudinal; Prospective
Memory and Aging Project (MAP) - at Washington University in St. Louis
United States
Y
Longitudinal; Prospective
Minority Aging Research Study
United States
Y
Longitudinal; Population-based; Prospective
Monongahela Valley Independent Elders Survey (MoVIES)
United States
N
Longitudinal; Population-based; Prospective
Monongahela-Youghiogheny Health and Aging Team (MYHAT) (aka Mild Cognitive Impairment: A Prospective Community Study)
United States
Y
Longitudinal; Population-based; Prospective
MultiDomain Alzheimer Preventive Trial (MAPT)
France
Y
Clinical research; Preventive research
Multi-Institutional Research on Alzheimer Genetic Epidemiology (MIRAGE) Study
United States
N
Clinical research; Genetics; Longitudinal
Multiple Risk Factors for Major Diseases (MRMD)
China
N
Longitudinal; Population-based; Prospective
N
National Alzheimer’s Coordinating Center (NACC)
United States
Y
Alzheimer's Disease Research Centers (ADCs); Collaborative; Data sharing; Longitudinal; Prospective
National Research Bank for Genetic Studies of Alzheimer’s Disease
United States
Y
Collaborative; Data sharing; Genetics
Naturalistic Assessment of the Driving Ability of Cognitively Impaired Elders
United States
N (2001-2011)
Longitudinal; Prospective
neuGRID
Europe
N (2008-2011)
Data sharing; Information resource; Neuroimaging
neuGRID for you (N4U)
Europe
Y
Data sharing; Information resource; Neuroimaging
Neurological Disorders in Central Spain (NEDICES Study)
Spain
N
Longitudinal; Population-based; Prospective
National Institute on Aging (NIA) Population Studies Database
United States
Y
Database; Population studies
North Karelia Project (NKP)/FINMONICA
Finland
N (1972-1992)
Intervention; Population-based
Nun Study of Aging and Alzheimer's Disease
United States
Y
Longitudinal; Prospective
Nurses’ Health Study/Nurses' Health Study II/Nurses' Health Study III
United States
Y (Nurses' Health Study III)
Biomarkers; Longitudinal; Prospective
New York University (NYU) Center for Brain Health - PET Study
United States
Y
Biomarkers; Longitudinal; Multicenter; Neuroimaging
The 90+ Study
United States
Y
Longitudinal; Prospective
The National Cell Repository for Alzheimer’s Disease (NCRAD)
United States
Y
Biological samples; Data resource/sharing; Genetics
O
Orange County Vital Aging Program (OCVAP)
United States
Y
Information resource; Tools
Oregon Brain Bank
United States
Y
Autopsy; Information Resource; Human tissue repository; Neuropathologic diagnosis
Origins of Variance in the Oldest-Old (OCTO-TWIN)
Sweden
Y
Longitudinal; Prospective; Registry
outGRID
Europe
N (2009-2011)
Collaborative; Data linkage; Data sharing; International; Neuroscience; Technology
P
Personnes Agées QUID (PAQUID) Cohort
France
N (1988-2003)
Longitudinal; Prospective
Predictors Study
United States
N
Multicenter; Prediction model; Prospective
Prevention of Dementia by Intensive Vascular Care (Pre-DIVA)
Netherlands
N (2006-2013)
Intervention; Randomized Controlled Trial
Prospective Population Study of Women in Goteborg (PPSW)
Sweden
N (1968-2011)
Longitudinal; Prospective
R
Religious Orders Study (ROS)
United States
Y
Brain tissue; Collaborative; Longitudinal; Multicenter; Prospective
Rochester Epidemiology Project (REP)
United States
Y
Collaborative; Longitudinal; Population-based; Record-linkage
Rotterdam Study
Netherlands
Y
Longitudinal; Population-based; Prospective
Royal College of Nursing (RCN) Dementia Project
United Kingdom
N
Dementia care provision; Guidelines
S
Sacramento Area Latino Study of Aging (SALSA)
United States
N (1996-2008)
Longitudinal; Prospective
SardiNIA
Italy; United States
N
Longitudinal; Population-based
Social Environment and Biomarkers of Aging Study (SEBAS)
China
N
Biomarker; Data sharing
Steel Valley Seniors Survey (SVSS)
United States
N
Clinical research; Longitudinal; Prospective
Swedish Brain Power (SBP) Research Network
Sweden
Y
Clinical research; Collaborative
Swedish Military Service Conscription Register Cohort
Sweden
N
Historical cohort
Swedish Twin Registry (STR)
Sweden
Y
Longitudinal; Prospective; Registry
The Swedish Adoption/Twin Study of Aging (SATSA)
Sweden
Y
Longitudinal; Prospective; Registry
The Swedish National Study on Aging and Care in Kungsholmen (SNAC/SNAC-K) Population Study
Sweden
Y
Longitudinal; Population-based; Prospective
T
Three-City (3C) study
France
N (1999-2012)
Longitudinal; Observational; Population-based; Prospective
U
Uppsala Longitudinal Study of Adult Men (ULSAM)
Sweden
Y
Longitudinal; Prospective
V
Vantaa 85+ study
Finland
Y
Longitudinal; Population-based; Prospective
W
Washington Heights-Inwood Columbia Aging Project (WHICAP)
United States
Y
Longitudinal; Neuroimaging; Prospective
Wisconsin Registry for Alzheimer’s Prevention (WRAP)
United States
Y
Longitudinal; Observational; Prospective
Women's Health Initiative Study of Cognitive Aging (WHISCA) - Women's Health Initiative (WHI) and WHI Memory Study (WHIMS)
United States
N
Clinical research
Women's Health and Aging (WHA) Study
United States
Y
Longitudinal; Prospective
World War II Navy and Marine veterans
United States
N
Population-based prospective historical cohort (men only)
§ This table is a work-in-progress. We hope that it will generate discussion and collaboration. Alzheimer’s & Dementia solicits suggestions from the wider scientific community of any additional entries for the final version of this inventory, as well as assistance to ensure presented information is accurate.
*For this table, we define “active” as project data presently being analyzed, published, and/or shared, even if data collection has been completed.
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