Publicly available biomedical 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).

The Global Alzheimer’s Association Interactive Network (GAAIN) has developed the first operational online integrated research platform, which links scientists, shared data, and sophisticated analysis tools. Investigators can address scientific questions of unprecedented complexity by accessing massive shared data sets and can share their own data by joining our global network of Alzheimer’s disease study centers. The database contains clinical data, such as participants’ medical history, cognitive assessment, and demographic details, neuroimaging data, including MRI and PET, genetic data, such as DNA sequencing, Neuropathological data, and longitudinal data. The database is powered by the Laboratory of Neuro Imaging (LONI) at the University of Southern California.

The MIRIAD dataset is a database of volumetric MRI brain-scans of Alzheimer’s sufferers and healthy elderly people. This study aims to identify structural and functional changes of the patient’s brain particularly in the early stages of Alzheimer’s Disease. The database contains a variety of data, including structural MRI, diffusion tensor imaging, functional MRI, clinical, cognitive assessment, and demographic data. To access the MIRIAD database, researchers need to go through an application process and agree to the data use and sharing restrictions.

The National Alzheimer’s Coordinating Center was established in 1999 by the National Institute on Aging/NIH to facilitate collaborative research. The center contains various types of dataset. The Uniform Data Set (UDS) is a longitudinal dataset, collected using a prospective, standardized, and longitudinal clinical evaluation of subjects in the National Institute on Aging’s ADRC Program. The Neuropathology Data Set is an autopsy dataset, which contains autopsy data for a subset of both Minimum Data Set (a dataset before UDS) and UDS participants and Minimum Data Set subjects. The collection of datasets in the center also includes MRI and PET imaging data, CSF biomarker data, and genotypic and genomic data.