Table 1. Working Inventory§ of studies, databases, and other resources related to dementia and aging (n=150), 2013 October
Location
Is project still
active* (Y/N)?
Study/database/resource type
Adult Changes in Thought (ACT)-Group Health Cooperative (GHC)
United States
Y
Longitudinal; Prospective
Adult Children Study (ACS), Memory Aging Project
Age-Related Neurodegenerative Diseases in Micronesia (ARNDM)/Guam Dementia
Project: Parkinson's Dementia Complex (PDC) of the Chamorro on Guam
United States
Y
Guam
N (1997-2002)
AgeNet (Aging Research Network)
AGES Reykjavik Study: The Reykjavik Study of Healthy Aging for the New
Millennium
Aging Demographics and Memory Study (ADAMS), part of the Health and
Retirement Study (HRS)
Alzheimer Disease & Frontotemporal Dementia Mutation Database (AD &
FTDMDB)
Canada
Y
Longitudinal; Prospective
Longitudinal; Prospective;
Tissue samples
Collaborative; Education;
Funds research
Study/Database/Project
A
Iceland; United States N
Genetics
United States
N
Population-based
Belgium
Y
Alzheimer Europe Network
Europe
Y
Database; Genetics
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
Alzheimer’s Disease Cooperative Study (ADCS)
United States
Y
Alzheimer’s Disease Neuroimaging Initiative (ADNI)
United States
Y
Alzheimer’s Disease Research Centers (ADRC), 29 Centers
United States
Y
Alzheimer’s Prevention Initiative (API)
United States
Y
Database
Alzheimer's Disease Prevention
Initiative; Clinical research;
Drug discovery, development,
and testing
Collaborative; Longitudinal;
Neuroimaging; Prospective;
Database/Data sharing
Basic, clinical, and behavioral
research sites; Network;
Collaborative Studies
Biomarkers; Clinical research;
Drug discovery, development,
and testing; Neuroimaging
Assessment of Health Economics in Alzheimer's Disease (AHEAD) Model
United States
N/A
Methods
Biomarkers; Collaborative;
Longitudinal; Neuroimaging;
Prospective; World Wide
Alzheimer's Disease
Neuroimaging Initiative (WWADNI)
Clinical research; Genetics;
Longitudinal
Australian Imaging, Biomarker and Lifestyle Flagship Study of Ageing (AIBL) /
Australian Initiative (COSMIC) - Australian ADNI
Australia
Y
The Alzheimer's Disease Genetics Initiative: The Multiplex Family Study
United States
Y
Baltimore Longitudinal Study on Aging (BLSA)
United States
Y
Barcelona-Pittsburgh Project
Spain; United States
Y
Biomarkers for Older Controls at Risk for Dementia (BIOCARD)
United States
Y
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
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
Cardiovascular Health Cognition Study (CHCS)
United States
N (1989-1999)
Cardiovascular Risk Factors, Aging and Dementia (CAIDE)
Finland
Y
Longitudinal; Prospective
Chicago Health and Aging Project (CHAP)
United States
Y
Longitudinal; Population-based;
Prospective
B
Longitudinal; Observational;
Prospective
Alzheimer’s Education Center;
Clinical; Collaborative;
Longitudinal; Research Center
Biomarkers; Longitudinal;
Neuroimaging
C
Biomarker; Collaborative; Data
sharing; Longitudinal;
Prospective; Multicenter
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
Cognition, Brain, and Aging (COBRA) Project
Sweden
Y
Cognitive and Emotional Health Project (CEHP): The Healthy Brain
United States
Y
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
Consortium of Canadian Centers for Clinical Cognitive Research (C5R)
Canada
Y
Consortium to Establish a Registry for Alzheimer’s Disease (CERAD)
United States
Y
Database; Intervention(s);
Observational;
Longitudinal; Neuroimaging;
Prospective
Collaborative; Current Aging
Research Status; Database;
Population-based; Prevalence
study
Clinical research;
Collaborative; Drug discovery,
development, and testing
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
Development of Screening Guidelines & Criteria for Pre-dementia Alzheimer’s
Disease (DESCRIPA)
Europe
N
Diagnostic Enhancement of Confidence by an International Distributed Environment
(DECIDE)
Italy
N (2010-2012)
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
Collaborative; Longitudinal;
Prospective
Clinical criteria; Collaborative;
Meta-analysis; Populationbased; Prospective; Screening
guidelines
Diagnostics; Information
resource; Tools
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
European Diffusion Tensor Imaging Study in Dementia (EDSD)
Europe
Y
European Huntington’s Disease Network/CHDI/Huntington’s Disease Initiative
Europe
Y
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
Sweden
Y
Intervention; Longitudinal;
Multicenter; Prospective
United States
Y
Longitudinal; Prospective
France
Y
Multicenter; Prospective;
Observational
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
German Study on Aging, Cognition and Dementia in Primary Care Patients
(AgeCoDe)
Germany
Y
Global Alzheimer’s Association Interactive Network (GAAIN)
United States
Y
Collaborative; Data sharing
The German Dementia Competence Network
Germany
Y
Collaborative; Research
Collaborative; Dementia
prevention trials
Clinical research; Imaging;
Multicenter; Technology
Drug discovery, development,
and testing; Funds research;
Research organization
F
Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability
(FINGER)
Framingham Heart Study (Original cohort, offspring, omni generations 1 and 2, and
generation 3)
French National Alzheimer Plan Cohort (MEMENTO)
G
Collaborative; Genetics;
International Genomics of
Alzheimer's Project (IGAP)
Longitudinal; Multicenter;
Prospective
support; Resource sharing
United States
N
Healthy Aging in Neighborhoods of Diversity across the Life Span (HANDLS)
United States
Y
Healthy Aging Through Internet Counseling in the Elderly (HATICE)
Europe
Y
Dynamics of Health, Aging, and Body Composition (Health ABC) Study
United States
Y
H70
Sweden
N (1971-2012)
HARMONY Study - The Study of Dementia in Swedish Twins
Sweden
Y
Health and Retirement Study (HRS)
United States
Y
Healthy Aging and Senile Dementia (HASD)
United States
N
Hisayama Study
Japan
Y
Honolulu-Asia Aging Study (HAAS)/Honolulu Heart Program (HHP)
United States
N
Human Brain Project (HBP)
Europe
Y
The Halcyon Project
United Kingdom
Y
Information resource
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
The Ginkgo Evaluation of Memory (GEM) Study
Clinical research
H
Biomarkers; Longitudinal;
Prospective
Collaborative; European
Dementia Prevention Initiative
(EDPI); Intervention;
Randomized Controlled Trial;
Technology
Biomarker; Collaborative;
Clinical research; Longitudinal;
Observational; Prospective
Longitudinal; Population-based;
Prospective
Longitudinal; Prospective;
Registry
Cross-sectional; Longitudinal
panel
Longitudinal; Prospective
Autopsy; Longitudinal;
Prospective
Autopsy; Longitudinal;
Prospective
Collaborative;
Neuroinformatics; Technology
I
Longitudinal; Neuroimaging;
Prospective
Longitudinal; Observational;
Prospective
Collaborative; Neuroimaging;
WW-ADNI
Longitudinal; Population-based;
Prospective
Data sharing; Longitudinal;
Population-based; Prospective
Israel Diabetes and Cognitive Decline Study
Israel
N
Israeli Registry for Alzheimer’s Prevention (IRAP)
Israel
Y
Italian ADNI (I-ADNI)
Italy
Y
Italian Longitudinal Study on Ageing (ILSA)
Italy
N
The InCHIANTI Study (Invecchiare in Chianti, aging in the Chianti area)
Italy
Y
The International Genomics of Alzheimer's Project (IGAP)
Europe/EADI; United
States/ADGC and
CHARGE; United
Kingdom/GERAD
Y
Collaborative; Genetics;
International
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
Laboratory of Neuroimaging (LONI)
United States
Y
Latino Aging Research Resource Center (LARRC)
United States
Y
Leisure World Cohort Study (LWCS)
United States
Y
Longitudinal Study of Drivers with Dementia
United States
N (2001-2005)
Manitoba Study of Health and Aging (MSHA)
Canada
N
Mayo Clinic Study of Aging (MCSA)
United States
Y
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
K
L
ADNI; Collaborative; Data
sharing; Neuroimaging
Collaborative; Information
resource; RCMAR
Longitudinal; Population-based;
Prospective
Longitudinal; Prospective
M
Longitudinal; Population-based;
Prospective
Longitudinal; Population-based;
Prospective
Monongahela Valley Independent Elders Survey (MoVIES)
United States
N
Monongahela-Youghiogheny Health and Aging Team (MYHAT) (aka Mild
Cognitive Impairment: A Prospective Community Study)
United States
Y
MultiDomain Alzheimer Preventive Trial (MAPT)
France
Y
Multi-Institutional Research on Alzheimer Genetic Epidemiology (MIRAGE) Study
United States
N
Multiple Risk Factors for Major Diseases (MRMD)
China
N
Longitudinal; Population-based;
Prospective
Longitudinal; Population-based;
Prospective
Clinical research; Preventive
research
Clinical research; Genetics;
Longitudinal
Longitudinal; Population-based;
Prospective
N
Alzheimer's Disease Research
Centers (ADCs); Collaborative;
Data sharing; Longitudinal;
Prospective
Collaborative; Data sharing;
Genetics
National Alzheimer’s Coordinating Center (NACC)
United States
Y
National Research Bank for Genetic Studies of Alzheimer’s Disease
United States
Y
Naturalistic Assessment of the Driving Ability of Cognitively Impaired Elders
United States
N (2001-2011)
neuGRID
Europe
N (2008-2011)
neuGRID for you (N4U)
Europe
Y
Neurological Disorders in Central Spain (NEDICES Study)
Spain
N
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
Longitudinal; Prospective
Data sharing; Information
resource; Neuroimaging
Data sharing; Information
resource; Neuroimaging
Longitudinal; Population-based;
Prospective
Orange County Vital Aging Program (OCVAP)
United States
Y
Information resource; Tools
Autopsy; Information
Resource; Human tissue
repository; Neuropathologic
diagnosis
Longitudinal; Prospective;
Registry
Collaborative; Data linkage;
Data sharing; International;
Neuroscience; Technology
Oregon Brain Bank
United States
Y
Origins of Variance in the Oldest-Old (OCTO-TWIN)
Sweden
Y
outGRID
Europe
N (2009-2011)
Personnes Agées QUID (PAQUID) Cohort
France
N (1988-2003)
Predictors Study
United States
N
Prevention of Dementia by Intensive Vascular Care (Pre-DIVA)
Netherlands
N (2006-2013)
Prospective Population Study of Women in Goteborg (PPSW)
Sweden
N (1968-2011)
Religious Orders Study (ROS)
United States
Y
Rochester Epidemiology Project (REP)
United States
Y
Rotterdam Study
Netherlands
Y
Royal College of Nursing (RCN) Dementia Project
United Kingdom
N
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
P
Longitudinal; Prospective
Multicenter; Prediction model;
Prospective
Intervention; Randomized
Controlled Trial
Longitudinal; Prospective
R
Brain tissue; Collaborative;
Longitudinal; Multicenter;
Prospective
Collaborative; Longitudinal;
Population-based; Recordlinkage
Longitudinal; Population-based;
Prospective
Dementia care provision;
Guidelines
S
Swedish Military Service Conscription Register Cohort
Sweden
N
Historical cohort
Swedish Twin Registry (STR)
Sweden
Y
The Swedish Adoption/Twin Study of Aging (SATSA)
Sweden
Y
The Swedish National Study on Aging and Care in Kungsholmen (SNAC/SNAC-K)
Population Study
Sweden
Y
France
N (1999-2012)
Longitudinal; Observational;
Population-based; Prospective
Sweden
Y
Longitudinal; Prospective
Finland
Y
Longitudinal; Population-based;
Prospective
Washington Heights-Inwood Columbia Aging Project (WHICAP)
United States
Y
Wisconsin Registry for Alzheimer’s Prevention (WRAP)
United States
Y
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
Longitudinal; Prospective;
Registry
Longitudinal; Prospective;
Registry
Longitudinal; Population-based;
Prospective
T
Three-City (3C) study
U
Uppsala Longitudinal Study of Adult Men (ULSAM)
V
Vantaa 85+ study
W
Longitudinal; Neuroimaging;
Prospective
Longitudinal; Observational;
Prospective
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.
World War II Navy and Marine veterans
United States
N