Executive Director's Corner

ADDI at One Year: Our Successes, Insights, and Future Plans
 

One year ago, ADDI took its first steps on the path to being a trusted partner in the global data sharing movement. Knowing we could not do it alone, we set our sights on tackling the hard problems of data access by closely collaborating with others who share our goals. We started by dedicating the right resources to build the right data-sharing platform for the Alzheimer’s research community. We also knew that our work would not be done until the Alzheimer’s community told us to stop.
 

As I reflect upon ADDI’s first year, I want to share with you our achievements, some of the lessons we learned along the way, and the work we still have left to do in the next year and beyond.
 

Our Successes: When we started this journey, ADDI and our partners had a vision—to create an innovative data platform—which today, is known as the AD Workbench. It would be here that academics, industry, and others would share their data and help expand our community’s understanding of Alzheimer’s disease and related dementias. Researchers who were interested in that data would come to ADDI, use the AD Workbench and other tools and resources, all at no cost, to access and analyze the data. The goal—to spur novel approaches to better understand this devastating condition.

In just one year, our success is reflected in the numbers!
 

Over 2,000 users from 80 countries, including users from 40 low- and middle-income countries, have engaged with the AD Workbench and have created more than 200 workspaces. Our data contributing partners have made it possible for these researchers to access more than 30 datasets, with more than 50 new datasets in our development pipeline.
 

For the next year and beyond, we will build on this and enable the acceleration of progress towards new treatments and cures.
 

Our Insights: Any journey worth setting out on will have some challenges, and we did expect some bumps and bends along the way. So, what did we learn this year? 

• Our work must balance the needs of both those who contribute data and those who use it. We heard from researchers that their experience using the AD Workbench needed improvements, so the ADDI team quickly got to work to make some notable changes to the user interface. 
• Federated access to data is a more popular pathway for data contributors than we initially thought. While we continue to encourage data contributors to allow either centralized or distributed access to their data, in many cases federated access is a more workable choice. 
• Broadening the data available on the AD Workbench is critical. Answers to Alzheimer’s disease and related dementias may be found not just in clinical trial data, but in a wide array of data sources, including observational data, genomics data, synthetic data, and brain imaging.
• We cannot avoid the issue of data harmonization. We know there is no perfect solution to synchronizing data across sources without any issues and making the AD Workbench interoperable with other data-sharing platforms does not eliminate this problem. We will continue to tackle this challenge head on. 

Our Future Plans: Our work ahead is to build on the momentum of the past year. To be the gateway for the largest, most diverse, most globally representative selection of Alzheimer’s disease and related dementias datasets. To be an indispensable resource for researchers who are tackling these problems. 
 

To complement this, we envision supporting a data-sharing community where researchers can come together to share ideas, post questions, offer tools and resources—all to increase engagement in this essential and meaningful work. Soon, we will launch our online community space, which will be available to anyone with an AD Workbench account. This will be a central meeting place for data-sharing peers: they will drive the content and engagement; we will provide the space and other resources.
 

We also want to uplift grassroots solutions. This may include reaching out to the research community to ask for new and innovative tools that can support data sharing or to solve smaller problems that are part of the Alzheimer’s disease and related dementias ecosystem. After all, who better to know the challenges in this field than those who are on the frontlines?
 

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For those of you who have been on this journey with us since the beginning—thank you! For those new to ADDI, welcome to our community! Together, we will take the steps needed to end Alzheimer’s disease and related dementias. 

Partner Spotlight

Vivli
 

Connecting Researchers to Critical Clinical Data  
A key part of ADDI’s success in this inaugural year is due to our partners and the commitment they have shown to our mission. We are excited to celebrate a new partnership with Vivli! This is important because often, data is hard to access and does not always exist in formats that allow it to be analyzed along with other information sources. Our relationship with Vivli will expand AD Workbench users’ access to and interoperability with dementia datasets from completed clinical trials hosted on the Vivli platform.  
 

Who is Vivli?
Vivli is a non-profit organization working to advance human health through the insights and discoveries gained by sharing and analyzing data. It operates a global data-sharing and analytics platform, which includes a data repository, in-depth search engine and cloud-based analytics. By harmonizing governance, policy, and processes, Vivli’s approach makes sharing data easier. 
 

What will this partnership achieve?
Today, this new partnership enables researchers to request datasets from Eli Lilly and Company (Lilly) and GlaxoSmithKline (GSK) through the Vivli platform and analyze it in ADDI’s data-sharing platform, the AD Workbench. This allows researchers around the globe and across disciplines to use this data to generate and test important new hypotheses. Over time, we hope to work together to ensure that this important data is re-used and analyzed as much as possible.
 

Researchers still need to learn so much about Alzheimer’s disease and related dementias, and widely accessible, high-quality data from clinical trials will be a critical part of their learning curve. 
 

“We are optimistic that the ability to combine these datasets with those on an Alzheimer’s and dementia-focused platform will hopefully move us closer to real-word insights for these devastating diseases.” Rebecca Li, Vivli Executive Director
 

Thank you to Vivli for this exciting partnership, which we look forward to growing in the coming months. Thank you to our AD Workbench users, who we hope will discover some novel insights within this data.

Researchers’ Toolbox

New Researcher-Created Data Analysis Tools on the AD Workbench

As ADDI looks ahead to its second year, we want to continue the spirit of collaboration, which is at the heart of our organization. That is why we reached out to the research community when we wanted to add tools to the AD Workbench. We wanted to know what novel data analysis tools are being developed, and how can ADDI support their development and offer them on the AD Workbench?  
 

[NEED A VISUAL HERE]
 

We asked these questions and the community responded! Of the numerous strong and innovative submissions, ADDI selected two proposals we believe will be most useful to research teams using the AD Workbench: The Bioada Platform and a Genome-Wide Association Study (GWAS) Analysis Pipeline. 
 

Bioada Platform: This tool is a scalable, near real-time and federated web-based data exploration and predictive modeling platform, which can be used to analyze microarray and RNA-Seq data. Researchers can utilize the Bioada Platform to accelerate the pace of biomarker discoveries and to build and share polygenic risk score models. While there is already a desktop version of this platform, researchers will also benefit from a publicly available web version. It is also notable that the Bioada platform links to the Gene Expression Omnibus (GEO) platform, which is a public functional genomics data repository that supports MIAME-compliant data submissions. This tool is being developed by Bioada.
 

GWAS Analysis Pipeline: GWAS is an analysis that tests associations between variants on the genome and phenotypes. GWAS pipelines can help support researchers by automating steps of the process, such as filtering low-quality variants and generating plots as well as performing the association test. Given the many complexities in this type of analysis, it is essential that researchers have access to comprehensive tools. This project will provide a high-quality, customizable GWAS pipeline on the AD Workbench, a common format for GWAS summary statistics, and exploration tools to provide a query-able visualization and meta-analysis pipeline. These tools are being developed by Data Tecnica International.
 

Thanks to everyone who submitted proposals. These tools will be available on the AD Workbench in the next few months.

Notable Knowledge

From around the country and around the world, the ADDI Team brings to you words of wisdom from the Alzheimer’s disease and related dementias community.
 

New Datasets Recently Available on the AD Workbench 

• Provided by Lilly: Datasets from GERAS-EU (GERAS I), GERAS II, GERAS-Japan, and GERAS-US observational studies, which collectively include more than 3,800 patient level records.
• Provided through Vivli: Datasets from 19 interventional studies from Lilly and GSK, which collectively include more than 5,000 patient level records.

Researchers may securely access these and other datasets on the AD Workbench.

Upcoming Events

November 29 – December 1, 2021: Alzheimer’s Europe Conference
Location: Virtual | More Information

On November 30, from 5:30pm – 6:30pm CET, ADDI will be hosting a symposium, titled “The Importance of Global Data Sharing in the Search for Novel Treatments and Cures.” 

December 9-11, 2021: EAN-EBRAINS Joint Workshop – the Future of Medical Data Sharing in Clinical Neurosciences
Location: Virtual | More Information 

January 17-21, 2022: World Economic Forum Annual Meeting
o    Location: Davos-Klosters, Switzerland | More Information

February 22-23, 2022: Tau2022
Location: Washington, DC + Virtual | More Information Pending

March 15-20, 2022: International Conference on Alzheimer’s and Parkinson’s Diseases and Related Neurological Disorders
Location: Barcelona, Spain + Virtual | More Information

March 22-23, 2022: NIH, ADRD Summit 
Location: Virtual | More Information 

Resources

NIA (National Institute on Aging) Data Sharing Resources for Researchers: This website provides Alzheimer’s and the broader aging research community with a variety of resources, including policies, considerations, and guidance. 
 

NIA-Funded Active Alzheimer’s and Related Dementias Clinical Trials and Studies: This website provides an overview of the active ADRD clinical trials that the NIA supports.

HHS Alzheimer’s Disease Research Centers (ADRCs): This website provides an overview of ADRCs, including local resources, supports, and opportunities to participate in ADRD research. 

Recent Publications

Report: World Alzheimer Report 2021 – Journey through the diagnosis of dementia, by Alzheimer’s Disease International and McGill University (Canada). This report includes over 50 essays from leading experts around the world, including clinicians, people with dementia and their caregivers, and numerous national Alzheimer and dementia associations. 
 

•    Study: Pre-Statistical Considerations for Harmonization of Cognitive Instruments: Harmonization of ARIC, CARDIA, CHS, FHS, MESA, and NOMAS, by Emily Briceño et. al., IOS Press, October 12, 2021. 
 

•    Study: Neuropsychiatric and Cognitive Symptoms Across the Alzheimer’s Disease Clinical Spectrum, by Willem Eikelboom, et. al., Neurology, Sept. 28, 2021. 
 

•    Study: Head-to-Head Comparison of Eight Plasma Amyloid-β 42/40 Assays in Alzheimer’s Disease, by Shorena Janelidze et. al., JAMA Neurology, Sept. 20, 2021. 
 

•    Study: Microglial Activation and Tau Propagate Jointly Across Braak Stages, by Tharick Pascoal et. al., Nature Medicine, Aug. 26, 2021. 

“Ask Alois …” 

To wrap up our newsletter, we want to leave you with this interesting and informative section—where we share with you a fact 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, when was Alzheimer’s disease first discovered?

In 1906, Dr. Alois Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. Her symptoms included memory loss, language problems, and unpredictable behaviors. After she passed away, Dr. Alzheimer examined her brain and found many abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary or tau tangles).
 

To learn more, see “The Discovery of Alzheimer’s Disease,” by Hanns Hippius and Gabriele Neudorfer.