Marking One Year Milestone, ADDI Expands Access to Global Data for Alzheimer’s Researchers
SEATTLE – Today, the Alzheimer’s Disease Data Initiative (ADDI) marked one year of transforming how Alzheimer’s disease and related dementias will be treated by significantly increasing access to data from academic institutions, government-sponsored organizations, pharmaceutical companies, and others dedicated to data sharing and collaboration.
“One year ago, ADDI took our first steps on the path to tackling the hard problems of data access in Alzheimer’s research in close collaboration with partners who share our vision,” said Executive Director Tetsuyuki Maruyama. “We started by dedicating the resources needed to build a platform that breaks down barriers so that the research community can access, analyze, store and share the data needed to accelerate progress on treating and curing Alzheimer’s disease. The progress ADDI and our partners have made in such a short amount of time is inspiring.”
Since its launch last year, ADDI’s cloud-based Alzheimer’s Disease (AD) Workbench has built a community of over 2,000 users in 80 countries, who have created more than 200 workspaces with access to over 35 datasets, many of which include data from diverse populations around the world. Researchers can also bring their own data into a secure workspace to analyze and make connections across multiple datasets. The trove of data available on the AD Workbench at no cost to registered users includes observational clinical trials, synthetic cohort studies, and synthetic brain images, all accessible in a secure and centralized location that allows researchers to explore freely field-level metadata and investigate datasets.
In addition to these milestones, ADDI also celebrated the following achievements:
- The first European data partner, the European Prevention of Alzheimer’s Dementia (EPAD) Consortium, which includes their first academic partner – the University of Edinburgh.
- The first major industry partnership with Eli Lilly and Company (Lilly), which shared their GERAS-EU study dataset. This was later followed by three other GERAS studies that now include data from seven countries (France, Germany, Italy, Japan, Spain, the United Kingdom, and the United States).
- Access to 19 new datasets from Lilly and GlaxoSmithKline (GSK) through a partnership with Vivli and interoperability with the Vivli platform.
- The first data sharing partner in Asia, the Indian Institute of Science Centre for Brain Research, which will provide federated access through the AD Workbench to home visit data.
“The success of our Data Science Challenge substantially increased user engagement on our platform and the introduction of data sharing capability in a federated manner effectively addressed data contributors’ requirement to be able to share data securely and remotely,” said Mukta Phatak, Director of Data Science at ADDI. “The AD Workbench will continue to expand and evolve with the addition of new datasets, analysis tools, and other products and services to meet the needs of the research community who are working to find treatments and cures for this disease.”
ADDI is currently in the process of adding more than 15 additional datasets in the next year. They also plan to expand their data sharing community into a gateway where researchers, data providers, and the broader Alzheimer’s and related dementia community can come together to share ideas, post questions, and offer tools or resources that further efforts to find answers to shared challenges.
Alzheimer’s Disease Data Initiative (ADDI), a 501 (c)(3) medical research organization (MRO) in partnership with the University of Washington, is dedicated to advancing scientific breakthroughs in the treatment of Alzheimer’s disease and related dementias. ADDI aims to increase interoperability of existing data platforms globally, increase sharing of dementia-related data from academic and industry sources, and empower scientists to find, search, combine, and analyze data that could lead to new discoveries in dementia research. ADDI also aims to enhance or fill gaps in datasets, including enabling the generation of more demographically representative datasets.