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 35 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.

Tetsu Maruyama

 

Date 11.17.2021
Source ADDI