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Inspire by ADDI | Winter 2022
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EXECUTIVE DIRECTOR'S CORNER
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Supporting the research community with AD Connect and the AD Workbench
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Two years ago, the Alzheimer’s Disease Data Initiative (ADDI) set out to work with others to accelerate advances in Alzheimer’s and related dementia research by breaking down data sharing silos and fostering global collaboration. While there is still far to go in finding new and meaningful diagnostics, treatments, and cures, we are encouraged by the community’s progress.
When a coalition of partners launched ADDI in November 2020, we brought the AD Workbench to the research community. This platform allows researchers to discover, access, and analyze 41 (and growing) datasets from academic, industry, government, and other organizations. Many of these datasets come from existing data sharing platforms that have partnered with ADDI to make their datasets interoperable with the AD Workbench. Today, ADDI has over 3,150 registered users from 89 countries, commissioned almost 1,000 workspaces, and has received more than 800 data access requests. We are continuously adding more datasets, analysis tools, and other resources.
But this is just part of ADDI’s efforts. We know that research advances will not be achieved by one person. We need to work as a community, and collaboration will be the key to our success. Together, we can support each other, share resources, and inspire new ideas. To do so, we’ve created AD Connect, our online community, to bring together and support data scientists, bioinformaticians, drug discovery experts, neuroscientists, clinicians, and researchers interested in accelerating dementia discoveries.
I invite you to explore AD Connect. Discover the resources we offer, hear what our members are saying, and find helpful information that can advance your work. On AD Connect you can find:
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- An extensive library of AD Workbench user guides and FAQs. Post a question about the AD Workbench on our forums and a fellow community member or ADDI team member will have the answer.
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- A growing collection of information about the datasets that are discoverable on the AD Workbench. You’ll find a short description, manuscripts citing the dataset, information on how to request access, and discussion posts.
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- Our community bulletin board. This is the place to read our latest news and updates, such as upcoming data science challenges, events, or interesting papers. You'll discover those and more on our forums.
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Like what you see? Join the conversation and become part of the ADDI community – you are just a few clicks away.
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Sincerely,
Tetsu Maruyama
Executive Director,
Alzheimer’s Disease Data Initiative
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Become a part our our community.
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PARTNER SPOTLIGHT
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Lilly, a leading data sharing partner
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Eli Lilly and Company (Lilly) is an industry leader in dementia drug development and is at the forefront in data sharing. Over the years, ADDI has benefited from Lilly’s insights into the Alzheimer’s research and the importance of data sharing.
Lilly’s contributions include not just its counsel but also data, with the GERAS datasets now available on the AD Workbench. The GERAS observational studies focus on better understanding the economic impact that Alzheimer’s disease can have on people with the disease and their caregivers. These studies span seven countries: France, Germany, Italy, Japan, Spain, the United Kingdom, and the United States.
“Real world evidence data is essential to innovation, health care system transformation, and helping researchers to advance new treatment solutions,” says Phyllis Barkman Ferrell, Global Head of External Engagement for Alzheimer’s and Neurodegeneration at Lilly. “We are proud to partner with ADDI to make available the GERAS datasets, so that researchers and scientists from around the world can analyze the data and generate meaningful insights for their local communities.”
Overall, researchers have found that people with mild dementia have significantly higher costs per patient per month than those with mild cognitive impairments. There are, however, opportunities for additional analyses. For example, among the GERAS studies there are variations in health care systems, cultures, lifestyles, and economic and treatment patterns – all of which could yield novel and significant insights into Alzheimer's disease.
The GERAS studies are among the most frequently accessed datasets on the AD Workbench. To learn more about the GERAS studies, please see our post on AD Connect.
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RESEARCHERS’ TOOLBOX
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Our Data Profiler is now available on the AD Workbench
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Our Data Profiler is a visualization tool to help researchers discover and review datasets to better understand variables, before requesting access on the AD Workbench. This allows researchers to know sooner whether a dataset can be valuable for their research, along with helping identify anomalies, patterns, or missing variables.
Currently, the Data Profiler is available for nine datasets:
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Over time, we will add more datasets and functionalities.
Check out the data profiles on the AD Workbench. Want to find out more about the Alzheimer's disease and healthy aging data or the Alzheimer's prevention virtual cohort? Visit our post on AD Connect that features information about many of the datasets available on the AD Workbench.
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Data harmonization: a new pre-print from DPUK
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See this new pre-print from the Dementias Platform UK (DPUK), which includes partners such as the University of Oxford, ADDI, and other academic and industry organizations: Evaluating the harmonisation potential of diverse cohort datasets by Sarah Bauermeister, et. al., posted Aug. 25, 2022.
This pre-print examines a set of 124 variables of broad interest to neurodegeneration researchers and seeks to harmonize them using the C-Surv data model. Although harmonization is not an exact science, the authors found that sufficient comparability across datasets was achieved to enable data discovery with relatively little loss of informativeness.
Read comments from the authors and share your thoughts on AD Connect.
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Be the first to get news, updates, and opportunities to engage with our community by following us on Twitter.
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EVENTS
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* ADDI is pleased to be a sponsor at this conference. If you are attending, please be on the lookout for more information about our organization.
You may find information about other conferences on AlzForum.
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In General
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Biomarkers
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Framingham Heart Study
You may find additional publications on AlzForum or ResearchGate.
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“ASK ALOIS…”
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Who is Alois? In 1906, Dr. Alois Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. This was the first identification of Alzheimer’s disease.
We use Dr. Alzheimer (Alois in this case) as our inspiration to wrap up our newsletter – to answer a question about Alzheimer’s disease, related dementias, data sharing, or the world at large. Maybe you can use this to stump your colleagues or friends?
Alois, what is Posit?
For years, data scientists and the research community have used RStudio, a programming language for statistical computing and graphics. Its products include an integrated development environment (IDE) for R. There is both an open-source and a commercial edition.
This summer, RStudio announced that it is changing its name to “Posit” – to better reflect its plan to expand its focus beyond R to include Python and Visual Studio Code. Posit’s open-source IDE will still be known as RStudio, even though it supports several languages. Its commercial products are now Posit Connect, Posit Workbench, and Posit Package Manager.
Are you an RStudio (now Posit) user? Share your tips and tricks with your fellow researchers in AD Connect.
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Building a future where open data and global collaboration powers the end of Alzheimer’s disease and related dementias.
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