Data

The Alzheimer’s Disease Genetics Consortium (ADGC) is a collaborative effort that brings together researchers from multiple institutions to study the genetics of Alzheimer’s disease. The primary goal of ADGC is to identify and understand genetic factors that contribute to the risk of developing Alzheimer’s disease and related dementias. By analyzing large-scale genomic data, ADGC aims to uncover genetic variants and mutations associated with the disease, which can lead to a better understanding of the underlying biological mechanisms and potential targets for therapeutic interventions.

The ADGC will provide the most recent and most comprehensive data available. The data sets available are listed on the ADGC Web site (link). These data are QC’ed by members of the ADGC-AC using a uniform process. As noted in the list of cohorts posted on the ADGC web site, some datasets require permission of the PI who contributed the dataset, and it is the responsibility of the SAG PI to seek permission from those PIs to use their data. If requested, imputed data will be provided using the most recent and largest imputation panel (e.g. TOPMed). A minimum phenotype dataset will be provided. If additional phenotypes are needed, the ADGC will work with the investigator to identify and acquire the needed data.

Australian Imaging Biomarkers & Lifestyle Flagship Study of Ageing (AIBL) is a large-scale research initiative to discover which biomarkers, cognitive characteristics, and health and lifestyle factors determine subsequent development of symptomatic Alzheimer’s Disease (AD). It contains prospective longitudinal study of cognition from more than 4.5 years and biomarker, cognitive, clinical, and imaging data of more than 1000 participants including patients with Alzheimer’s Disease (AD), mild cognitive impairment (MCI) and healthy volunteers. Since its launch in 2006, AIBL has been widely used in studies related to  research on early detection of AD, identification of important biomarkers for AD, and new therapies and treatments for AD. The AIBL data are available only to authorized users, but a subset of data (subjects with MR and PET) is available through the ADNI (Alzheimer’s Disease Neuroimaging Initiative).

European Medical Information Framework for Alzheimer’s Disease (EMIF-AD) was a collaborative initiative aimed to accelerate Alzheimer’s disease research by providing access to large-scale data resources. It aims to address challenges faced in Alzheimer’s disease research by facilitating data sharing and collaboration among researchers, clinicians, and industry partners. By pooling and harmonizing data from various sources, EMIF-AD aimed to improve understanding of Alzheimer’s disease, identify potential biomarkers, and explore novel therapeutic targets. EMIF-AD includes a variety of data types, such as clinical data, genetic data, biomarker data, and epidemiological data. The project was a part of the broader European Medical Information Framework (EMIF).

The data generated in the context of the EMIF-AD MBD study is available upon request after approval of the research question by all parent cohorts and the EMIF-AD team. Data requests can be submitted via the EMIF-AD Catalogue (https://emif-catalogue.eu).

The European Prevention of Alzheimer’s Dementia Consortium (EPAD) is a unique and ground-breaking European initiative to streamline the testing and development of preventative treatments for Alzheimer’s disease. The EPAD project was part of the Innovative Medicines Initiative (IMI), a joint undertaking between the European Union and the European Federation of Pharmaceutical Industries and Associations, EFPIA. EPAD funding from IMI came to an end in October 2020. It was the largest ever public-private partnership in Alzheimer’s disease research, combining knowledge and expertise from 39 organizations across multiple sectors.

To access the data, users will need to make an online request via the Alzheimer’s Disease Workbench of the Alzheimer’s Disease Data Initiative (ADDI).