A note from Niranjan Bose, Interim Executive Director of AD Data Initiative 

As we prepare to close out the year, I want to take a moment to reflect on the incredible progress we’ve made together at the AD Data Initiative—and to celebrate you, the vibrant community of partners and contributors who make our work possible.

2024 has been a year of game-changing wins for AD research and remarkable milestones for our coalition, including the celebration of our 4-year anniversary.

We strengthened our partnerships with GAAIN, HDRUK, and DPUK; launched new collaborations with others involved with data sharing including AnswerALS; co-hosted a featured research session with GAAIN and the Alzheimer’s Association at AAIC that spotlighted how data sharing and collaboration are driving new discoveries; and supported the launch of the EPND Hub, which streamlines discovery and access to biosamples and datasets, in addition to providing users with tools and free computing within workspaces on the AD Workbench. All these efforts are advancing the ecosystem for Alzheimer’s and neurogeneration researchers through shared resources that enable open science.

We celebrated the publication of key platforms in Frontiers in Neuroinformatics, launched a second open call for our flagship William H. Gates Sr. Fellowship, and kickstarted competitions like the GAP Bio-Hermes Biomarker Data Challenge, giving researchers unprecedented access to dementia biomarker data and supporting them to open the door to new discoveries. 

And perhaps most inspiring of all, we were moved by the insights shared by thought leaders across our field. Over the past year, we revitalized the Alzheimer’s research questions that first inspired our coalition’s inception, which will inform new driver projects that will propel our growth. For our anniversary, leaders across the coalition also shared their perspectives on our achievements and the most exciting areas of potential for our future. Across their reflections, we heard one common theme – facilitating open access to high quality data will help us untangle the greatest complexities of Alzheimer’s disease.

This conviction in the transformative potential of data-sharing reaffirmed Bill Gates’ recent call to action: "This is a moment of great possibility for Alzheimer’s and dementia R&D... We have the partners, we have the momentum, we have the data and the tools—and, with more than 50 million people suffering from Alzheimer’s and dementia worldwide, we still have the urgent need."

It's why we’re not stopping.

Every dataset shared, every research challenge undertaken, and every partnership formed brings us closer to understanding and defeating Alzheimer’s disease and related dementias.

As we look ahead to 2025, I’m filled with gratitude and optimism. The strides we’re making together—from simplifying data access to pushing the boundaries of research with bold new initiatives —are proof of what’s possible when we work as one. 

To our partners, both new and longstanding: thank you for your vision, your dedication, and your trust. Together, we’re not just accelerating progress, we’re laying the foundation for breakthroughs that will change lives and rewrite the future.

Here’s to everything we’ve achieved and to all that we’ll accomplish in the year ahead.

Wishing you and yours a relaxing and cheerful holiday season, and a very happy 2025.

Best,

Niranjan Bose

Interim Executive Director

AD Data Initiative

P.S. We have two new interoperability efforts that we plan to annouce in early 2025 and some exciting data challenges. If you know someone who would like to get updates on our work, please share this newsletter, and invite them to subscribe here. Stay tuned for more.

PARTNER AND PROJECT SPOTLIGHT

AD Workbench’s Federated Data Sharing Appliance (FDSA) - Simplified Login: Single Sign-On (SSO) acts like a master key that unlocks multiple doors without the need to carry a separate key for every room. For the AD Workbench FDSA, this new, streamlined access allows data providers to share datasets with researchers while keeping original data secure within their own storage environment, allowing researchers to reach, unlock, and analyze remote data without it ever leaving their infrastructure, and ensuring both security and privacy.

Answer ALS (AALS): The AD Data Initiative has taken a significant step forward in advancing seamless data access and collaboration on research focused on Alzheimer’s disease, related neurodegenerative disorders, and brain health. SSO integration is now live between AD Workbench and the AALS’s Neuromine Data Portal, bringing together these research communities to achieve even more ambitious levels of interoperable connection.

If you’re a data owner and interested in making your data discoverable on AD Workbench with FDSA, please reach out to us, here. We’d love to learn more about your organization and dataset.

NEW DATA CHALLENGES

The AD Data Initiative’s Data Challenges aim to galvanize our community to generate new insights in the Alzheimer’s disease and related dementias space. Below are updates on current Challenges.

The GAP Bio-Hermes Biomarker Data Challenge (concludes in March 2025): More than 20 UK-based research teams are currently analyzing the Global Alzheimer’s Platform’s (GAP’s) Bio-Hermes study data. The teams are presently investigating a range of topics including disease progression, earlier detection, and diagnosis, using a combination of various markers, and differences in correlations among underrepresented populations. 

The Bio-Hermes Biomarker Data Challenge was created in collaboration with the Scottish Funding Council’s Brain Health ARC, researchers at the Universities of Glasgow and St. Andrews in Scotland, and GAP, to interrogate the study’s 80,000 test results from over 1,000 US-based participants, of which 24% are from traditionally underrepresented communities.

NEW DATASETS NOW ACCESSIBLE VIA THE AD WORKBENCH

Since September 1, 2024, 15 new datasets have been made discoverable on AD Workbench, several of which surfaced through federated connections with partners. Below is a sampling of the newly discoverable ones:

Whitehall II Study (DPUK Data Portal): Established in 1985 to investigate the importance of socioeconomic circumstances for health, the study aims to understand the causes of age-related heterogeneity in health by following a cohort of working men and women aged 35-55 at enrollment. By combining the existing 28 years of data on social inequalities and chronic disease with new clinical measures of cognitive function, mental disorders, and physical functioning, Whitehall II has transformed the interdisciplinary study of ageing. To date, participants have taken part in 11 data collection phases, six of which have included medical screenings.

Human iPSC Astrocytes and iMGL Transcripts (Washington University in St. Louis): This dataset contains genetic sequencing data and analysis results, focusing on samples with the MAPT IVS10+16 mutation and their genetically corrected controls. The study used human stem cells, developed into microglia (brain immune cells) through a specialized process, and analyzed extracted RNA to study gene activity, providing insights into the role of this mutation in neurodegenerative diseases.

Neurite and Whole Cell Transcriptomics on iNeurons (CARD, the NIH's Center for Alzheimer's and Related Dementias): This study characterized the neuritic transcriptome of iPSC-derived neurons and the whole cell transcriptome, providers performed RNA sequencing on neurons fractionated into a pure neuritic population (neurites) and a companion "whole cell" fraction. This was performed on day 17 post dox induction WTC11 neurons, both on wild type cells and on neurons containing non-targeting, TDP-43, or hnRNPA1 KD. The RNA sequencing files from the analysis can be requested.

MexCog 10/66 Study (Washington University in St. Louis): Through a harmonized dataset that takes a significant step forward in the field of dementia research within Latin American populations, this effort integrates and standardizes data across two major cohort studies to facilitate more comprehensive analyses and insights into the epidemiology and mechanisms of cognitive decline and dementia. It also includes detailed assessments of ageing and cognitive health within Latino populations.

EPND ATN Study (Subset) (EPND): The European Platform for Neurodegenerative Diseases (EPND) derived this dataset from a mixed cohort of 350 individuals with AD, PD, DLB, and controls recruited from seven European studies (10 cohorts): Akershus University Hospital (DDI), Deutsches Zentrum für Neurodegenerative Erkrankungen (DANCER, DELCODE, DESCRIBE, MIGAP), Motol University Hospital (CBAS), Stavanger University Hospital (NOR-DLB),University of Geneva (COSCODE/gMAD), University of Luxembourg (Luxembourgish Parkinson study), and VU University Medical Center Amsterdam (ADC). The dataset includes measures of CSF and plasma Aß42, Aß40, p-tau181, NfL, and CSF α-Syn (NeuroToolKit), centrally analyzed on banked samples collected from the 350 participants from across the 10 cohorts.

Learn more at AlzheimersData.org

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