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Executive Director's Corner
How Data from Diverse Populations Can Help Solve Alzheimer’s
The Alzheimer’s Disease Data Initiative (ADDI) sees a lot of reasons to be optimistic about the future of Alzheimer’s disease (AD) diagnostics, disease-modifying treatments, and clinical research. Over the past year, ADDI launched our AD Workbench, and we continue to add robust datasets and increase the number of researchers who are using our tools and resources. Over the next several months, we are looking forward to building on this foundation – we hope you will be inspired to continue engaging with our community!
To launch our first newsletter of 2022, I want to share my thoughts about something that inspires the ADDI community – the inclusive approach we are all striving to take in AD research and how data sharing can help accelerate new and meaningful discoveries.
Many know firsthand the toll AD takes on individuals, families, and communities. This toll is not limited to people from any one country, culture, or race. A staggering 55 million people worldwide—more than the population of South Korea—live with AD and related dementias, and this number continues to rise at an astounding pace.
To stem this growth, we need to accelerate the development of meaningful dementia treatments and cures. These breakthroughs will come from data that people provide in clinical trials, longitudinal cohort studies, and other research efforts.
AD and other dementias’ global footprints tell us that this data should be from a diverse array of people. Yet all too often, researchers are working with datasets from predominantly white patient groups, especially in North America and Western Europe.
Globally, data reveals that participants in typical clinical trials for neurological indications, including AD and other dementias, are about 75% white. As Jason Resendez and Stephanie Monroe of UsAgainstAlzheimer’s wrote in STAT, the under-representation of non-white populations is also prevalent in the United States, which enrolls 35% of the world’s clinical trial participants. Experts say that Black Americans are two to three times more likely to develop AD than non-Latino whites, and Latinos are one and a half times more likely to develop AD. Despite these higher risks, Black Americans and Latinos are less likely to receive a timely diagnosis, which is one reason why they make up a minority of the patients in clinical trials.
The problem is clear: to make meaningful progress on dementia treatments and cures, more work must be done to ensure that researchers are studying data from diverse populations. Any comprehensive treatment or cure will need to consider how a constellation of determinants, including genetic, environmental, and social, affect a person with dementia. As Dr. Rhoda Au from Boston University wrote in an insightful opinion piece in STAT last month, “this lack of diversity has real world consequences.”
The solution is two-fold. First, researchers conducting dementia clinical trials must recruit more diverse clinical trial cohorts. Second, researchers examining existing datasets need access to data that reflects the diversity of the global population living with dementia. While these solutions look simple, unfortunately, they are not.
ADDI, along with our data users and partners, is helping tackle the second part of the solution. Among the 34 (and growing) datasets on the AD Workbench (ADDI’s cloud-based data sharing platform), there are several that reflect the diversity needed to accelerate therapeutic advances.
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The Global Alzheimer’s Platform’s (GAP’s) Bio-Hermes research study: GAP is committed to keeping enrollment in its Bio-Hermes trial open until at least 20% of participants are Black Americans and Latinos, which will embed a more diverse group of participants directly into the study’s design. This is one important model for future dementia studies and clinical trials.
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World-Wide FINGERS network of dementia-prevention trials: ADDI is engaged with the FINGERS Brain Health Institute (FBHI) to assist with developing global sites within the network, which includes (or will include) studies from more than 40 countries across Africa, the Americas, East and South Asia, and Europe. To support data sharing, FBHI provides a framework and standard set of protocols so that the results can be harmonized, compared, and combined, benefitting local communities, as well as global research.
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The Multi-Partner Consortium to Expand Dementia Research in Latin America (ReDLat): Some ReDLat researchers are using ADDI tools and resources to compare data from six Latin American countries to the datasets generated in the United States. Latin America includes some of the most genetically diverse people in the world, and enabling ReDLat’s dementia research efforts will take us closer to unlocking novel insights.
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ADDI is actively engaged with these studies and finding new partnerships that will enrich the diverse data available on the AD Workbench. Eliminating dementia needs to include expanding our access to data and supporting those who use this data. There are no divisions of country, culture, or race when it comes to this devastating disease, and we need to approach our pursuit of new treatments and cures the same way. In the coming month and years, ADDI looks forward to increasing our number of datasets and users from across the globe, including those from low- and middle-income countries. I hope you will join us on this journey!
Tetsu Maruyama
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Partner Spotlight
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The Centre for Brain Research at the Indian Institute of Science: Conducting One of the World’s Largest Aging Studies
ADDI is pleased to celebrate a new dataset partner – the Centre for Brain Research at the Indian Institute of Science (CBR-IISc). This is an important relationship for us: not only does it enable access to data from India’s largest longitudinal dementia study through the AD Workbench, but it also marks our first partnership outside the United States and Western Europe.
Who is CBR-IISc?
CBR-IISc is a non-profit research organization focused on brain health and disease research. Its aim is to foster focused interdisciplinary neuroscience research, with the primary goal of discovering additional therapies for dementia and other age-related brain disorders. CBR-IISc has initiated comprehensive, long-term longitudinal studies of aging populations from the state of Karnataka. The uniqueness of the Indian population provides an ideal basis for carrying out such studies, including identifying potential protective and risk factors.
What Will This Partnership Achieve?
ADDI and its data partners like CBR-IISc are committed to fostering collaboration. This includes increasing access to data so researchers can accelerate the development of new and more effective treatments and cures for AD and related dementias. Through this partnership and in accordance with Indian data privacy and protection standards, dementia researchers around the world now have federated data access to these studies.
As in many other countries, Alzheimer’s disease and other dementias are poised to be one of the major burdens of disease for India’s older population. Indian studies are uniquely equipped to assess risk and protective factors for dementia in populations, which may be different from what is known so far from studies conducted in the United States and Western Europe. We hope this will spur researchers to combine datasets and analyze data from diverse groups.
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Researchers’ Toolbox
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As we build our inventory of robust datasets, we are also looking to increase our inventory of data analysis tools and resources. We are pleased to announce several new tools and resources are now available, which we hope will inspire researchers around the world!
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Federated Data Sharing Appliance (FDSA)
ADDI now has an FDSA that researchers can use to query a federated dataset in a streamlined manner. Soon to be an open-source resource, this will be an invaluable analytical tool as ADDI continues to add federated datasets to the AD Workbench.
With the FDSA, researchers can write code in their chosen language (e.g., Python or R) and once containerized, submit queries to the federated dataset. ADDI is continuing to build our docker library of containers and looks forward to increasing not just the number of researchers accessing the library, but also the number of community-developed containers and algorithms.
To familiarize yourself with FDSA, we offer four Jupyter Notebooks. They include: an introduction to FDSA Programming Interfaces (APIs), how to dockerize (containerize) scripts, how to perform a two-stage federated analysis, and how to apply an algorithm to create a simulated dataset.
Bioada Platform
Last year, ADDI announced that the Bioada Platform was one of two proposals selected in our open request for new and innovative tools. This scalable, near real-time web-based data exploration and predictive modeling platform is now available on the AD Workbench, and can be used to analyze microarray and RNA-seq data to accelerate the pace of biomarker discoveries and to build and share polygenic risk score models.
GWAS Analysis Pipeline
The other proposal ADDI selected in our open request was a GWAS Analysis Pipeline. GWAS analyses test associations between specific genetic variations and phenotypes. Developed by Data Tecnica International, the GWAS pipelines are now available on the AD Workbench. This supports researchers by automating steps of the process, such as filtering low-quality variants and generating plots, as well as performing association tests. The new pipelines offer a high-quality, customizable workflow for AD Workbench users, a common format for GWAS summary statistics, and exploration tools to provide a query-able visualization and meta-analysis pipeline.
All these tools and resources are available on the AD Workbench.
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Notable Knowledge
From around the country and around the world, the ADDI Team brings you news from the AD and related dementias community.
New Datasets
To date, AD Workbench users can access 34 datasets - and we are working to grow this list over the coming months and years. Since our last newsletter, we have added:
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Researchers may securely access this and other datasets on the AD Workbench.
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Upcoming Events
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* ADDI is pleased to be a sponsor at this conference. If you are attending virtually or in-person, please be on the lookout for more information about our organization and our work.
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Noteworthy Publications
Below is a selection of publications that may be of interest to the ADDI community.
Related to diverse populations:
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Related to data sharing:
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Part of the Global Burden of Disease study:
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* You can find additional publications on AlzForum or ResearchGate.
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“Ask Alois …”
Who’s Alois? In 1906, Dr. Alois Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness, the first identification of Alzheimer’s disease. Here we ask Alois 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, how are the songs “Fly Me to the Moon” and “Paparazzi” connected to Alzheimer’s disease?
In 1965, Tony Bennett recorded “Fly Me to the Moon,” and in 2008, Lady Gaga recorded “Paparazzi.” The award-winning artists have been friends for almost a decade, releasing two collaborative albums, “Cheek to Cheek” and “Love for Sale.”
In an October episode of 60 Minutes, Lady Gaga talks about her friendship and professional collaboration with Tony Bennett, who was diagnosed with Alzheimer’s disease in 2016. Last summer, AARP published an insightful three-part series about Tony Bennett’s life, including his diagnosis.
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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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