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A NOTE FROM NIRANJAN BOSE, INTERIM EXECUTIVE DIRECTOR OF AD DATA INITIATIVE
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Our recent season has been equal parts busy and exciting. Busy, because of the sheer volume of projects in our pipeline. Exciting, because the great variety of those projects is helping to accelerate progress towards new diagnostics, treatments, and cures for Alzheimer’s disease and related dementias (ADRD).
Together with our partners, we continue to expand the number of datasets discoverable or requestable through the interoperable connections of the AD Workbench. It’s been rewarding to see data from partners, like the Davos Alzheimer’s Collaborative (DAC) Health Systems Preparedness Early Detection Program, and the Dementias Platform UK (DPUK) Data Portal, be made available to so many (you can read about these and more below). It’s been just as rewarding to witness our community of users rally around this work.
We engaged with many members of said community at this year’s AAIC in Philadelphia, a conference attended in person by more than 8,500 members of the ADRD field, where 750 experts delivered podium presentations and researchers from around the globe showcased more than 4,500 posters on the latest dementia research.
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AD Data Initiative coalition booth at AAIC24.
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We were energized to meet so many colleagues in our collaborative booth and were boosted by their feedback in our featured research session (co-hosted by the Alzheimer’s Association and GAAIN), which addressed the benefits and importance of data and resource sharing in our work. Many people shared their optimism for advancements in diagnostic tools, particularly blood biomarkers, or the use of AI and machine learning applications. Others shared that the lack of diversity in both data and clinical trial participants, or the complexity and heterogeneity of the disease all created essential challenges we must still overcome.
At the AD Data Initiative, our goal is to make interoperability in ADRD research the norm – and our approach is multi-part. One part of our work involves encouraging and supporting academic and industry partners to share their dementia-related data. Another focuses on building an enabling environment that empowers researchers to accelerate new discoveries. We do this by delivering on technological solutions, like our recent improvements to FDSA and Query Builder, which will ensure the user experience on the AD Workbench is more intuitive and seamless; or by facilitating new research efforts, like the recently launched data science challenge – the Scottish Challenge – which fosters collaboration, generates insights, and attracts more researchers to the ADRD field.
These efforts to foster global cooperation and optimize data access confirm something important: there is an unprecedented demand for data sharing and technical collaboration to accelerate ADRD research.
Along with our entire team at the AD Data Initiative, I’m pleased to see how all our activities – and those of our partners – fit together to advance our objectives. Because if the sum of all parts makes a greater whole, we will continue seeking out new parts, integrative approaches, innovative partnerships, and creative solutions, all that will add to our shared desire to create a thriving ecosystem that will accelerate breakthroughs in ADRD.
We invite you to join us.
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Best,
Niranjan Bose
Interim Executive Director
AD Data Initiative
P.S. If you know someone who would like to learn about our work, please share this newsletter, and invite them to subscribe here.
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PARTNER AND PROJECT SPOTLIGHT
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GNPC: The Global Neurodegeneration Proteomics Consortium has completed its enrollment and harmonization of data from over 20 cohorts from Europe and the United States to create a dataset of over 300,000,000 protein measurements from around 40,000 patient samples. The release of the first definitive version of this Harmonized Data Set (HDS) in June 2024 via the AD Workbench has kicked off analyses being led across several workstreams looking at cross-sectional, longitudinal, and disease-specific data analyses. The period of within-consortium embargo has also been initiated, with a commitment to public sharing of the dataset in June 2025 via the AD Workbench in a cloud-accessible, but non-downloadable manner. We are initiating the next phase of bringing in additional partners for more intensive analysis of the V1 dataset, as well as resources and funding to grow the dataset for V2.
ReD-Lat: ReD-Lat is a multi-country, multi-partner consortium is focused on expanding dementia research in Latin America and the Caribbean. With projects in Argentina, Brazil, Chile, Colombia, Mexico, Peru, and the United States, researchers will combine genomic, neuroimaging, and behavioral data to improve dementia characterization and identify novel inroads to treat neurodegeneration in diverse populations.
CHARIOT:PRO Sub-Study (SS): Funded by Johnson & Johnson, Merck, Takeda, and Gates Ventures, and conducted at Imperial College in London, CHARIOT:PRO SS is a prospective, non-interventional study evaluating cognitive trajectories of people in the pre-clinical stages of AD. By characterizing the factors influencing cognitive and functional progression in those at risk for AD, it may be possible to identify more precise predictors of such changes. This dataset’s embargo period will end in September 2025.
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NEW DATA CHALLENGES
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The AD Data Initiative’s data challenges are designed to both generate insights in the immediate term and attract researchers to Alzheimer’s disease and related dementias in the medium and long term. After a hiatus in 2023, we have two data challenges underway:
The Scottish Challenge: Under the auspices of the Scottish Funding Council’s Brain Health ARC, researchers at the Universities of Glasgow and St. Andrews in Scotland were invited to apply for access to GAP’s Bio-Hermes data. Approximately 30 researchers from a variety of disciplines are currently working with the study’s 80,000 test results to investigate a range of topics including disease progression, earlier detection and diagnosis using a combination of various markers, and differences in correlations among underrepresented populations.
UK Biobank: The UK Biobank is considered one of the largest, most comprehensive, and most powerful health datasets in the world. In a closed challenge, 12 groups aim to explore ways to use optical coherence tomography (OCT) to make predictions about Alzheimer’s, as it has been used in diabetes, heart disease, and other disease areas.
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AD WORKBENCH AT-A-GLANCE
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NEW DATASETS NOW ACCESSIBLE VIA THE AD WORKBENCH
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Longitudinal cohort studies through interoperability with Dementias Platform UK (DPUK): Aberdeen Children of the 1950s (ACONF), Cambridgeshire Parkinson’s Incidence from GP to Neurologist (CamPaIGN), The Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation-PD (ICICLE-PD), and SleepQuest: Researching sleep to improve brain health are now available to request through AD Workbench.
Boston University Alzheimer’s Disease Research Center (BU ADRC) data, collected through an American Heart Association Strategically Focused Research Network (AHA SFRN): This includes both Uniform Dataset (UDS) data shared to the National Alzheimer’s Coordinating Center and non-UDS measures collected through BU ADRC. The research encompasses diverse behavioral and clinical assessments, social and economic data, and care arrangements, primarily aimed at informing policy and understanding disease impact in underrepresented regions. This comprehensive dataset also enables meaningful comparisons with other large-scale population studies, offering unique insights into the epidemiology of dementia in this diverse population.
Davos Alzheimer’s Collaborative (DAC) Health Systems Preparedness Early Detection Program: Data collected from the Indiana University Flagship site of the program aimed at increasing the rate of early detection of cognitive impairment in primary care and non-specialty settings by implementing digital cognitive assessment is now available.
New University of California San Francisco (UCSF) datasets that can be used to identify disease associations, cell-specific impacts and therapeutic targets are available. These datasets include:
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RNA-sequencing of cells derived from dermis and postmortem dura mater from the same subject.
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Bulk whole genome sequencing of cells derived from dermis and postmortem dura mater from the same subject.
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Single-cell RNA-seq data derived from early-onset AD cases and controls.
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ANNOUNCEMENTS
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Cohort 2 of the William H. Gates Sr. AD Fellowship – Applications open this Fall:
The application process for the second cohort, with a narrower focus on researchers with great ideas about how to leverage generative artificial intelligence to accelerate progress in AD research and development, will open this fall. In addition to conducting their own research projects, fellows will serve as a resource for one another and as a source of ideas for the research community at large.
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For more updates please visit: News and Updates
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EVENTS - Q3 2024
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Key Conference Schedule
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August 2024
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IMPACT-AD: Institute on Methods and Protocols for Advancement of Clinical Trials in ADRD
25 – 30 August 2024
San Diego, California
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The 11th Aging Research and Drug Discovery Meeting (ARDD 2024)
26 – 30 August 2024
Copenhagen, Denmark
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Biomarkers for FTD Clinical Trials
27 – 29 August 2024
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September 2024
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HEAT-Net 2024 Frontiers in Neurodegeneration: from Bench to Bedside
05 – 06 September 2024
Cádiz, Spain
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1st International Symposium in Georgia on Cognitive Disorders
05 – 08 September 2024
Tbilisi, Georgia
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The Leuven Protein Aggregation Meeting (2nd edition)
11 – 13 September 2024
Leuven, Belgium
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The Future of Dementia in Africa: Advancing Global Partnerships
11 – 12 September 2024
Nairobi, Kenya
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American Neurological Association (ANA) 2024
14 – 17 September 2024
Orlando, Florida
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FASEB Conference: Cellular and Molecular Mechanisms of Brain Aging
15 – 19 September 2024
Niagara Falls, New York
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AAIC Advancements: Modernizing Diagnosis
18 – 19 September 2024
Tokyo, Japan and Online
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14th International Conference on Frontotemporal Dementias (ISFTD2024)
19 – 22 September 2024
Amsterdam, Netherlands
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FASEB Conference: Transcription, Chromatin, and Epigenetics in Aging
22 – 26 September 2024
Melbourne, Florida
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Grand Challenges in Parkinson's Disease
23 – 24 September 2024
Grand Rapids, Michigan
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International Psychogeriatric Association (IPA) Meeting
25 – 27 September 2024
Buenos Aires, Argentina
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CNS 2024: The 17th Annual Meeting of the Chinese Neuroscience Society
26 – 29 September 2024
Suzhou, China
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