AD Data Initiative | Taking Flight: Toward AD/PD 2025 and Beyond

The Alzheimer's Disease Data Initiative (ADDI)

FROM THE DESK OF NIRANJAN BOSE

When I last wrote to you, I noted that the AD Data Initiative was celebrating its fourth anniversary. As we embark on year five, I’m proud to say our coalition has hit the ground running as never before.

Before I talk about some important milestones we’ve recently reached, an important update: In early April, we will be taking the show on the road to the AD/PD 2025 International Conference on Alzheimer’s and Parkinson’s Diseases. We hope we can connect with many of you in person in Vienna, Austria.

On Tuesday, April 1, we will host our first Alzheimer’s Insights Summit, a pre-conference symposium that will bring together experts from around the world to discuss data-sharing and global collaboration on ADRD research, and to explore uses of AI for this work. We hope you can attend – if you’ll be at AD/PD and are interested in joining, please RSVP here.

We are also sponsoring a session on Friday evening, April 4 (18:20-20:00) on the Global Neurodegeneration Proteomics Consortium (GNPC), which is analyzing the largest proteomics data set in the world – more than 300 million protein measures. The fully harmonized dataset, which includes proteomic and phenotypic data from more than 20 cohorts and ~40,000 biosamples, will be available on AD Workbench this July.

Finally, throughout AD/PD 2025, we will be hosting a collaborative booth showcasing our coalition’s product and service offerings, our data platform partnerships, and discussing our collective efforts to advance data-sharing and research collaboration. Stop by Booth 16 to learn more about our work and our partnerships!

As we will be happy to tell you in person in Vienna, our coalition’s efforts are bearing fruit. The AD Workbench now has more than 6,000 registered users. With the recent inclusion of Dementia Research Group 10/66’s Life2Years database, which you can read more about below, AD Workbench now hosts more than 100 unique datasets.

Researchers can also now explore these datasets via the newly launched AD Discovery Portal – a user-friendly, publicly accessible dataset catalog designed to enable users to explore novel AD data available via AD Workbench. The Discovery Portal offers a diverse collection of data, including imaging, omics, clinical, and multi-modal datasets, providing a comprehensive resource for researchers.

AD Workbench is also becoming increasingly interoperable with other key ADRD research platforms, making more data available to all. For example, with Sage Bionetworks, we are currently integrating AD Workbench with the AD Knowledge Portal, the NIH-designated portal for ADRD research. This effort, alongside other ongoing partnerships with Answer ALS’s Neuromine Data Portal and the American Heart Association’s Precision Medicine Platform, will further expand interoperability, making it even easier for researchers around the world to find, access, and/or share data that can move innovation forward more quickly.

After years of working to create a strong foundation for ADRD research collaboration and data-sharing, it’s thrilling for all of us to see these efforts take flight. For those of you who are already part of this important work, thank you for your support. And if you haven’t signed up for AD Workbench, come join!

Thanks again, and I hope to see you in Vienna.

Best,

Niranjan Bose

Interim Executive Director

Alzheimer's Disease Data Initiative

P.S. If you know someone who would like to learn more about our work, please share this newsletter, and invite them to subscribe here.

ANNOUNCEMENTS

AD Discovery Portal: To make our more than 100 datasets even easier for ADRD researchers to find and explore, we have just launched the AD Discovery Portal. This intuitive, publicly accessible catalog lets scientists look through all the datasets they can use to accelerate their own research via AD Workbench.

Cohort II of the William Gates Sr. AD Fellowship Program: We expect to have more to share soon about our second cohort of William Gates Sr. AD Fellows, who will be selected over the next quarter. We received 93 applications from 22 countries for Cohort II, which will focus on opportunities to harness generative AI and machine learning to boost ADRD research.

Bio Hermes Scottish Challenge: Stay tuned for a readout of the winners of this challenge, expected on or around March 21.

NEW DATASETS NOW ACCESSIBLE VIA AD WORKBENCH

Five new datasets are now accessible through AD Workbench, bringing our running total to over 100. New datasets in 2025 include:

Dementia Research Group 10/66 - Life2Years Database: The DRG 10/66 program, a comprehensive cohort study of individuals aged 65 and older in eight low- and middle-income countries, completed Life2Years, a third follow-up with participants as well as some new 65-and-over contributors, in 2019. All 10/66 and Life2Years participants underwent a full neurological assessment and physical exams. This dataset covers cohort participants from Cuba, the Dominican Republican, Puerto Rico, Peru, and Mexico.

Amyloid imaging for Phenotyping Lewy Body Dementia (AMPLE): AMPLE undertook amyloid PET imaging in Lewy Body Dementia (LBD) and Alzheimer's disease (AD) participants to investigate the distribution of amyloid burden in LBD relative to AD and controls at baseline, and to better understand the relationship between these baseline levels and clinical features of these diseases.

Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA): Set up by the Center for Public Health in Queen’s University Belfast, NICOLA follows the health, social, and economic circumstances of ~8,500 male and female volunteers aged 50 and over living in Northern Island and is the most comprehensive such study in the region.

Dementia Research Group – Incidence Database: This dataset covers incidence data from the 10/66 population-based study in six Latin-American countries and territories: Cuba, the Dominican Republican, Puerto Rico, Venezuela, Peru, and Mexico. Comprising 15,901 elderly participants at baseline, this study includes 53,872 person-years of follow-up.

Cognitive Function in Ageing Study II (CFAS II): Conducted from 2008-2011, CFAS II provides baseline health and cognitive information on older people aged 65-84, who in the 2020s reached the age of greatest fragility. Building on CFAS I, this study used similar methods to measure the health, cognition, and functional ability of older people, thus allowing for the examination of differences in this next generation of the older population.