The Alzheimer's Disease Data Initiative (ADDI)

FROM THE DESK OF NIRANJAN BOSE, INTERIM EXECUTIVE DIRECTOR 

From March 5-9, we’ll be in Lisbon for AD/PD 2024, the International Conference on Alzheimer’s and Parkinson’s Diseases and related neurological disorders, to highlight our efforts in making AD data findable, usable, and accessible to drive research progress.

 

Gatherings like this, where scientists, academic and industry experts, and policymakers discuss progress in the field of Alzheimer’s and related dementias are always an opportunity for learning. For us at the AD Data Initiative, they are also an opportunity to show how our coalition of partners are working together to enable advances in AD research and in doing so, promoting even more progress in our field.

 

Since our founding in 2020, the AD Data Initiative has become a centralized hub for open data and global collaboration with a single mission: to end the disease that devastates the 55 million people living with it, worldwide. 

 

We serve that mission by sharing, requesting, storing, and streamlining findings that can expand our collective knowledge and drive faster developments in AD research. And when new partners join us, they help countless researchers around the world search datasets on existing platforms, add new multi-dimensional datasets, combine data found across multiple platforms, and analyze new and existing datasets to advance research that will generate new therapies. 

 

As we continue to grow our network, we’re incredibly pleased to share that two colleagues have joined our advisory board: Phyllis Ferrell represents the Davos Alzheimer’s Collaborative, which unites organizations in building an innovation ecosystem to accelerate AD breakthroughs; and Ben Rotz joins us from Eli Lilly and Company, where he is Associate Vice President, Global Medical Policy Strategy and Operations.


Only when experts from varied sectors partner to accelerate progress, can we have a better – and faster – chance at new diagnostics, treatments, and cures for AD. It’s why as Interim Executive Director of the AD Data Initiative, my role will be to ensure we continue to work together with all our partners, from industry to academia, so we can break down silos and accelerate progress towards an Alzheimer’s breakthrough. 


I look forward to seeing you in Portugal, where we will host a live symposium titled: Bridging a Gap: How several key efforts are making their data and samples accessible to the broader research community, featuring Drs. Miia Kivipelto, Simon Lovestone, Rhoda Au, Jean Manson, Phil Scordis, and Phyllis Barkman Ferrell. I also hope you will stop by our AD Data Initiative booth (Booth #42), featuring data platform partners GAAIN, DPUK, EPND, HDR UK, and Vivli. 

 

If you’ll miss AD/PD this time, I hope we’ll see you at the conference virtually, and later, in the AD Workbench – where you can share data, resources, and tools that will accelerate discoveries in AD research and bring us closer to ending this disease.

 

Best,

 

Niranjan Bose

Interim Executive Director

AD Data Initiative

Geometric pattern and logo for Dementias Platform UK, which includes the a pink outline of a brain.

PARTNER AND PROJECT SPOTLIGHT

AD Data Initiative partners spearhead research initiatives: Coalition members have launched several projects leveraging AD Workbench to unlock new data and foster collaborations. 

 

Alzheimer’s Drug Discovery Foundation

 

Using the AD Curation Studio, the Alzheimer’s Drug Discovery Foundation’s SpeechDx initiative is pairing speech and clinical data from five sites to help researchers develop algorithms that predict the onset of Alzheimer’s and related dementias. Eventually, derived speech data will be made accessible through the AD Workbench. 

 

The Institute for Health Metrics and Evaluation & AARP 

 

The Institute for Health Metrics and Evaluation is analyzing existing data to quantify the impact of 12 dementia risk factors identified by the Lancet Commission. While AARP, which is supporting the work, will link findings to its “Staying Sharp” advocacy campaign. Links to data sources, derived data, dashboards, and scripts will be made accessible through the AD Workbench.

 

Global Neurodegeneration Proteomics Consortium

 

The Global Neurodegeneration Proteomics Consortium is bringing together more than 30 cohorts to create a harmonized data superset including more than 40,000 samples for AD biomarker and disease mechanism discovery. The data is only available to consortium members but will be publicly accessible in 12 months.

 
 

OUR PROGRESS AT A GLANCE

  • 68 datasets (including 5 synthetic) representing 749,990 participant records, on the AD Workbench and discoverable via FAIR search portal

  • 4,833 registered AD Workbench users in 114 countries 

  • Half of the countries represented in the AD Workbench are from low and middle-income countries 

  • The AD Data Initiative Repository is listed as an NIH-recognized repository for AD data sharing 

  • Federated Data Sharing Appliance launched, with 7 licenses installed

  • The William H. Gates Sr. AD Fellowship, created to empower researchers, is fully operational with an inaugural cohort of seven early-career researchers

 

NEW DATASETS NOW ACCESSIBLE VIA THE AD WORKBENCH

  • Alzheimer’s Prevention Initiative (API) Generation Studies 1 and 2 from Banner Health. Two of the world’s first trials of investigational amyloid-modifying therapies in individuals with genetic risk factors for Alzheimer’s, with data from 120 sites in 24 countries.

  • Long-read DNA and RNA sequencing data from The National Institutes of Health Intramural Center for Alzheimer’s and Related Dementias (NIH CARD). Long-read data (up to 1 million base pairs long, compared to up to 200 with short-read) enables unique analyses to engage previously unanswerable questions.

  • CSF proteomic study data from Amsterdam UMC. Pivotal in identifying five molecular subtypes of Alzheimer’s disease with distinct genetic risk profiles. Read more

  • RNA-sequencing data, bulk whole genome sequencing data, and CRISPRi screens from the University of California, San Francisco. Three different datasets to facilitate cellular and genetic analyses.

Datasets Coming Soon:

  • Boston University Alzheimer’s Disease Research Center (BU ADRC) data, collected through an American Heart Association Strategically Focused Research Network (AHA SFRN). Includes both Uniform Dataset (UDS) data shared to the National Alzheimer’s Coordinating Center and non-UDS measures collected through BU ADRC.

  • 10/66 from the 10/66 Dementia Research Group. Data from several Central and South American countries. 10/66 refers to the fact that 10% or less of population-based research is conducted in low and middle-income countries while 66% of people with dementia live there. 

 

EVENTS

Researcher Roundtable: Innovative Imaging Modalities and Advancements in Dementia Research | Thursday, March 21, 2024, 7:00a.m. - 8:15 a.m. PDT  

Register

This researcher roundtable will include a moderated discussion with four panelists who will talk about their work, their views on the role of novel imaging technologies in Dementia research, and how the scientific community can use these advances to transform research. Panelists will answer questions from the audience throughout this event.

Panelists:

  • Barbara Marebwa – Associate Director, The Michael J. Fox Foundation

  • Sean Deoni – Senior Program Officer, Bill & Melinda Gates Foundation MNCH D&T  

  • Frederik Barkhof – Full Professor of Brain Imaging, Amsterdam UMC 

  • Michael Schöll, Ph.D. – Professor of Molecular Medicine, Wallenberg Centre for Molecular and Translation Medicine 

Moderator: Natalia Vilor-Tejedor – Gates Sr. AD Fellow, BarcelonaBeta Brain Research Center (BBRC); Co-chair, Brain Imaging Genetics working group at PIA for Neuroimaging, Alzheimer's Association

Key Conference Schedule

Alzheimer's Research UK Conference 2024
05 – 06 March 2024
Liverpool, U.K. and Online
View conference website

AD/PD™ 2024: Advances in Science & Therapy

05 – 09 March 2024
Lisbon, Portugal and Online
View conference website

Annual World Congress of the Society for Brain Mapping and Therapeutics (SBMT) 2024
14 – 17 March 2024
Los Angeles, California
View conference website

a2 National Symposium: Empowering Innovation in AI/Tech + Aging
19 – 20 March 2024
Philadelphia, Pennsylvania
View conference website

Tau2024 Global Conference
25 – 26 March 2024
Washington, D.C. and Online
View conference website

European Conference on Clinical Neuroimaging- ECCN 12th Edition 2024
25 – 27 March 2024
Leipzig, Germany
View conference website

Latinos & Alzheimer’s Symposium
04 – 05 April 2024
San Diego, California and Online
View conference website

Photo of Geometric architecture.

Learn more at AlzheimersData.org

© Alzheimer's Disease Data Initiative 2023 | Click here to unsubscribe or to change your Subscription Preferences.