Additional data sets available

Global Alzheimer’s Association Interactive Network

GAAIN logo

The Global Alzheimer’s Association Interactive Network (GAAIN) is a big-data community for cohort discovery and data exploration that promotes data sharing among a federated, global network of data partners who are studying Alzheimer’s disease and other dementias. It is a collaborative project that provides researchers around the world with access to clinical, genetic, and imaging data on Alzheimer’s disease from hundreds of thousands of subject participants through compelling and intuitive graphical user interfaces. Led by Arthur Toga, PhD, Director of the Laboratory of Neuro Imaging (LONI) at the University of Southern California, GAAIN’s goal is to transform the way researchers work together to answer fundamental questions related to understanding the causes, diagnosis, treatment, and prevention of Alzheimer’s disease. To learn more and use GAAIN, visit http://www.gaain.org.

Alzheimer’s Disease Cooperative Study

ADCS logo

Data sharing is integral to the ADCS’s mission to develop and execute innovative clinical trials focused on interventions that may prevent, delay, or treat the expression of Alzheimer's disease and related dementias. The ADCS is committed to sharing resources and tools including data, biospecimens, trial designs, outcome and analysis measures. The ADCS follows NIH guidelines for data sharing, making its legacy data broadly available and accessible to the research community at large for the purpose of furthering research. The ADCS currently has data sets from over 20 of its clinical trials available to investigators.

For more information on the data sets, please see this spreadsheet. To request data sets, please visit the ADCS website.

The Rush Alzheimer's Disease Center (RADC)
Research Resource Sharing Hub

The RADC has several prospective cohort studies that generate an enormous variety of unique data and biospecimens available for sharing. The RADC Research Resource Sharing Hub was designed to help non-RADC investigators navigate these complex data and biospecimens and to assist in identifying data and biospecimens that can be used to support their projects. These data are already widely shared with other NIA and ADC projects, e.g., ADGC, ADSP, NIA-LOAD, CHARGE, IGAP. RADC also offers Information on NACC UDS compatible data items collected by cohort studies.

CERAD data

Please note that the CERAD data described below resulted from studies that were conducted independently of NACC; we serve only as a storage place.

Consortium to Establish a Registry for Alzheimer's Disease (CERAD): The first twenty years

Alzheimers Dement. 2008 Mar;4(2):96-109,PMID: 18631955

Gerda G. Fillenbaum, Gerald van Belle, John C. Morris, Richard C. Mohs, Suzanne S. Mirra, Patricia C. Davis, Pierre N. Tariot, Jeremy M. Silverman, Christopher M. Clark, Kathleen A. Welsh-Bohmer, Albert Heyman

ABSTRACT: The Consortium to Establish a Registry for Alzheimer's Disease (CERAD) was funded by the National Institute on Aging in 1986 to develop standardized, validated measures for the assessment of Alzheimer's disease (AD). The present report describes the measures that CERAD developed during its first decade and their continued use in their original and translated forms. These measures include clinical, neuropsychological, neuropathologic, and behavioral assessments of AD and also assessment of family history and parkinsonism in AD. As approach to evaluating neuroimages did not meet the standards desired. Further evaluations that could not be completed because of lack of funding (but where some materials are available) include evaluation of very severe AD and of service use and need by patient and caregiver. The information that was developed in the U.S. and abroad permits standardized assessment of AD in clinical practice, facilitates epidemiologic studies, and provides information valuable for individual and public health planning. CERAD materials and data remain available for those wishing to use them.

More information about CERAD, including how to request data, can be found here.