§ 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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