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Executive Director's Corner
Supporting a Global Open Data Community
Before the Alzheimer’s Disease Data Initiative (ADDI) launched a year and a half ago, we heard from the dementia community that we must remove silos and fully commit to a global approach to make meaningful progress in finding new diagnostics, therapies, and cures. We know that we cannot rid the world of this dark disease if the brightest minds are working alone, which is why ADDI is dedicated to breaking down barriers to data sharing.
As part of this effort, more than 2,600 researchers worldwide have used ADDI’s cloud-based platform, the AD Workbench, to discover, access, and analyze more than 40 (and growing) available datasets from academic institutions and industry organizations committed to open data. Many come from existing data sharing platforms that have agreed to make datasets interoperable with the AD Workbench, allowing more users to access data more seamlessly.
ADDI also supports work that addresses data sharing barriers. We are excited to expand our strong existing partnership with the Dementias Platform UK (DPUK). The DPUK team is a world leader in curating and analyzing data from longitudinal cohort studies. Their efforts to develop data harmonization and curation tools will enhance all AD Workbench users’ abilities to understand the data that can be accessed on our platform.
The dementia community recognizes that this complex disease requires novel approaches. ADDI encourages endeavors that go beyond traditional perspectives. As a leading example, Dr. Rhoda Au and her team at Boston University are exploring digital and voice-recording data as a diagnostic tool through their “Cross-Cutting Digital Data” program. While this was not viable 20 years ago, today it may yield some intriguing insights.
There are several excellent studies using voice and other digital data in North America and Europe, but we are especially excited about the Davos Alzheimer’s Collaborative’s (DAC) work in low- and middle-income countries. Unlike traditional clinical data, digital and voice-recording data is easier and less expensive to collect and could become a valuable way to understand and diagnose dementia in more resource-limited parts of the world. Through DAC’s efforts, we are looking forward to the possibility of bringing in data from under-represented populations around the world, integrating that data with those from existing studies, and enabling their use by researchers in the low- and middle-income countries themselves.
In alignment with our mission, ADDI is also actively supporting collaboration in the open data community. We are pleased to give AD Workbench users access to our new online community – AD Connect! This space allows researchers to connect with each other, ask questions, discuss issues, and find important information. Not only will you find resources to help you work in the AD Workbench, but you will also find (or maybe you will start) broader engagement among the dementia community and with the ADDI team. Look forward to hearing more about AD Connect as we add new content and inspire engagement. Our aim is for users to consider this one of their “go to” resources!
This work and that of thousands of others in the dementia community cannot be done alone. ADDI’s goal is to support this work – the bold and innovative efforts that span across disciplines, institutions, countries, and cultures. Together we can fundamentally transform research and move the world closer to new and meaningful diagnostics, therapies, and cures.
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Sincerely,
Tetsu Maruyama
Executive Director, Alzheimer’s Disease Data Initiative
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Partner Spotlight
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The Alzheimer’s Association and the Upcoming Alzheimer’s Association International Conference
July 31- August 4, San Diego, USA + Virtual
The Alzheimer’s Association works to unite caregivers and families, provide support to those facing Alzheimer’s, and advance research. The scope of their mission is reflected in the array of activities the association and its members are engaged in – hosting seminars for caregivers and people facing Alzheimer’s, advocating with policymakers, funding research, and much more.
As ADDI was being developed, we knew we could not do this without the voice of the Alzheimer’s Association. They were part of a coalition of organizations that came together to help shape our pilot, provided insights as we launched, and today, are a key member of our Advisory Board.
Our work is complementary, which is why ADDI supports several of their events, including the upcoming Alzheimer’s Association International Conference (AAIC). This is an annual opportunity for the world’s leading scientists, clinical researchers, early career investigators, and clinicians to come together, share ideas, and inspire new discoveries. This year, ADDI is pleased to be a Gold Sponsor.
As our first in-person conference, you can find several ways to connect with us at AAIC!
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ADDI will host product demonstrations, share information about our services and resources, and give out some fun swag (Booth 821)! We will be joined by Roche Diagnostics (Booth 212) to spotlight the new NeuroToolKit (NTK) App (see the Researcher’s Toolbox section for more details).
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On Monday evening (August 1), ADDI will be joined by Roche Diagnostics, the European Prevention of Alzheimer’s Dementia (EPAD) Consortium and other partners to host a symposium, “Advancing Biomarker Research: The New NTKApp and Our Data Hackathon. An Example of Community, Collaboration, and (Some Fun) Competition.” Join us for some drinks, food, and conversation. Please register with ADDI to reserve your spot. More information about our symposium will also be in the AAIC agenda and digital event bag.
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Researchers’ Toolbox
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Advancing Biomarker Research: The NTKApp and Our Upcoming Data Hackathon
Developed by Roche Diagnostics and a group of collaborators, we are excited to announce that the beta version of the NTKApp will soon be available on the AD Workbench. For updates, keep an eye on AD Connect, our social media channels, and website.
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The NTKApp includes three interlinked modules that allow researchers to curate, analyze, and compare biomarker datasets and results.
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The NTK Analysis module provides a suite of powerful, descriptive statistics to gain immediate insight into data. Outputs are available in publication quality tables and interpretable graphical visualizations, which can be saved locally.
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The NTK Meta Analysis module allows data to be compared with other data across the community. This clarifies the clinical utility of biomarkers, how they can be used in clinical trials, and ultimately which biomarkers warrant further development for use in routine clinical practice.
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A fun way users can get early access to the NTKApp is by participating in our upcoming virtual hackathon. The ADDI NTK Data Hackathon is from July 1 – 17. Self-selected teams of 2-4 people will use the NTKApp, datasets from the EPAD Consortium, the AD Workbench, and AD Connect to investigate the potential clinical utility of different biomarkers in Alzheimer’s disease.
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Ready to register for the ADDI NTK Data Hackathon?
Teams interested in participating must register by June 24.
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Register Here
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Notable Knowledge
From around the country and around the world, the ADDI Team brings you words of wisdom from the dementia community.
Summer 2022 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.
Additional conferences and events can be found on AlzForum.
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Publications
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While there are numerous dementia publications made available every day, below is a selection that may be of interest to the ADDI community.
Digital biomarkers
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Neuroimaging
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Authored by notable voices in dementia
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Essay: Davos Alzheimer’s Collaborative. Drew Holzapfel (DAC) and Matt Clement (ADDI), May 25, 2022. Plan to Impact V, WHO Global action plan: The time to act is now (pp. 64-65).
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You can find additional publications on AlzForum or ResearchGate.
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“Ask Alois …”
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.
Dr. Alzheimer (Alois in this case) inspired us to wrap up our newsletter with an interesting question about Alzheimer’s disease, related dementias, data sharing, or the world at large. Maybe what you learn will stump your colleagues or friends!
Alois, what is the second most common form of dementia?
While Alzheimer’s disease accounts for most dementia cases, vascular dementia is the second most common form. It occurs because of microscopic bleeding and blood vessel blockage in the brain. In vascular dementia, changes in thinking skills sometimes occur suddenly after a stroke, which blocks major blood vessels in the brain. Vascular brain changes often co-exist with changes linked to other types of dementia, including Alzheimer’s disease and Lewy body dementia.
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Dedicated to advancing scientific breakthroughs in the treatment of Alzheimer's disease and related dementias.
We’re aiming to move Alzheimer’s disease (AD) innovation further and faster by connecting researchers with the data they need to generate insights to inform development of new, better treatments and diagnostic tools for AD and related dementias.
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© Alzheimer's Disease Data Initiative 2022
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