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THANK YOU, TETSU!
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A Message from the ADDI Board of Directors on the Departure of our ADDI Executive Director
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The ADDI Board of Directors is extremely thankful to Dr. Tetsuyuki (Tetsu) Maruyama for the leadership and vision he brought to the AD Data Initiative and the organization through the last few years. He not only helped launch the organization with our coalition of partners, but was instrumental in scaling it, establishing important partnerships with key organizations while collaborating with stakeholders across academia, advocacy, government, industry, and philanthropy to enable data sharing in pursuit of new diagnostics, therapies, and cures for people affected by dementia. On behalf of the ADDI team and the partners, we extend a heartfelt thanks to Tetsu for his contributions and wish him the very best in his future endeavors.
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“We are also extremely grateful to all our partners for their continued support and wish everyone a happy and relaxing holiday season.”
– Paul Ramsey & Niranjan Bose on behalf of The ADDI Board of Directors
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COLLABORATION AS A CORNERSTONE FOR PROGRESS IN ALZHEIMER’S AND RELATED DEMENTIAS RESEARCH
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A Departing Message from Tetsu Maruyama, ADDI Executive Director 2020 – 2023
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Over the past three years, it has been an honor and a privilege to be a part of this coalition working diligently to defeat dementia. The team at ADDI, alongside partners across various sectors, are committed to making ADRD data available, empowering researchers worldwide to contribute to and interrogate the data that matters most to people everywhere.
With our coalition members and partners, we are establishing infrastructure to enable hypotheses to be generated and tested, therapeutic intervention or biomarker development targets to be validated, and risk factors to be evaluated. By establishing interoperability with long-established platforms like Dementias Platform UK (DPUK) and The Global Alzheimer’s Association Interactive Network (GAAIN), creating resources such as the Federated Data Sharing Appliance (FDSA), and collaborating with companies like Roche Diagnostics to develop analytical tools like the NeuroToolKit app, together we are building resources that enable more people to access more data. AD Connect community events, new AD Workbench datasets, and the William H. Gates Sr. AD Fellowship demonstrate the breadth and power of sharing and reusing data to drive an active community of global research collaboration.
I am very proud of the work the ADDI team, our partners, and collaborators have begun, and the support we have received from our Board of Directors, Advisory Board, and the Global Technical Advisory Committee. I am confident that in the next years, they will make even greater progress toward our ultimate goal, where open data and global collaborations power the end of Alzheimer's disease and related dementias.
Thank you so much for your partnership, support, and commitment to work – wishing you all continued success in our shared mission to defeat dementia.
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Sincerely,
Tetsu Maruyama
Executive Director,
Alzheimer’s Disease Data Initiative
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2023: A YEAR OF EMPOWERING RESEARCHERS
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THE WILLIAM H. GATES SR. FELLOWSHIP BY THE AD DATA INITIATIVE
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This year, in collaboration with coalition members and partners, the first cohort of The William H. Gates Sr. AD Fellowship was established. Named after William H. Gates Sr., this fellowship honors his legacy of advocacy and philanthropy by supporting a new generation of researchers developing novel approaches to end Alzheimer’s disease and related dementias.
The inaugural cohort of seven fellows are a remarkably accomplished, passionate, and talented group from around the world. Their research includes topics such as artificial intelligence/machine learning, biostatistical modeling, functional genomics, and neuroepidemiology.
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Watch the November Researcher Roundtables to meet the Gates Sr. AD Fellows and learn about their novel approaches to ADRD research:
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PARTNERSHIP SPOTLIGHT
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HDR UK Data Pilots
Partners: HDR UK, University of Edinburgh, Public Health Scotland, Moorfields Eye Hospital NHS Foundation Trust
This is a two-year program to make some of the UK’s most comprehensive routine health imaging data, collected in real-world clinical settings, more findable and accessible for dementia research projects within the UK and worldwide. Retinal images in the AlzEye dataset from Moorfields and brain images in the SCANDAN dataset from the University of Edinburgh will soon be available to analyze on AD Workbench. Read our announcement to learn more about the program.
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"We are delighted to be working with ADDI and UK partners to pool our collective expertise and establish new ways to make large-scale, real-world health data more readily available to facilitate dementia research in a secure and trustworthy way."
– Andrew Morris, Director, HDR UK.
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NEW DATASETS
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The amount of available, permissible data on the AD Workbench has grown substantially to more than 60 datasets and counting. Explore and learn about some of our newest datasets, and don’t forget metadata is available for immediate analysis!
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Honolulu-Asia Aging Study, from the NIH Intramural Center for Alzheimer’s and Related Dementias (CARD). A longitudinal study of Japanese-American men in Oahu, Hawaii to determine dementia prevalence, incidence, and risk factors.
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MIND-ADmini dataset, from WW-FINGERS. A randomized controlled trial that examined lifestyle and other interventions in Finland, France Germany, and Sweden.
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Generation Scotland, from DPUK. A large, family-based intensively-phenotyped cohort recruited from the general population across Scotland to study the genetics of important health areas. Includes NHS linkages.
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Cognitive Function and Ageing Study, from DPUK. The dataset includes 18,000 subjects at baseline with initial aim of investigating dementia and cognitive decline in representative sample of people 65+. Includes interviews, clinical assessments, and brain tissue.
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Brains for Dementia Research, from DPUK. Included in this dataset are 3,200 subjects (30% with dementia) with brain tissue collected alongside clinical and cognitive information gathered throughout life. Represents six brain banks.
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Mis-spliced transcripts generate de novo proteins in TDP-43-related ALS/FTD, from NIH-CARD. Included in this dataset are transcriptomics and proteomics assessed in TDP-43 depleted iPSC-derived neurons to identify mis-spliced proteins; ribosome sequencing, mass spec, proteomics and long-read RNA-seq files.
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TOMMORROW (User Guide), from Duke Clinical Research Institute (DCRI). A user guide to accompany the TOMMORROW study dataset aimed to orient users to the data, answer commonly asked questions, and serve as a reference for common use cases. Researchers are directed to the Vivli Platform where access can be requested.
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The AD Data Initiative thanks these organizations and all our collaborators for your commitment to data sharing! Read more about these and other datasets on AD Connect, and sign up or log back in to request access on the AD Workbench.
Stay tuned to AD Connect and our social media for more datasets coming soon to AD Workbench:
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NEW RESOURCES
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In 2023, the AD Data Initiative hosted several community events and expanded research video tutorials available on AD Connect. You can watch the events and access the tutorials in the AD Connect Video Library.
New additions to the video library:
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ADDI Summer and Autumn Learning Series
Two series including four, expert led sessions each. The learning series discuss AD Workbench available datasets, and research topics like single-cell sequencing and digital voice data.
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ADDI Researcher Roundtables
In addition to the Researcher Roundtables highlighting the Gates Sr. AD Fellows, three new panel discussions with live Q&A are available:
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Demos on AD Workbench and Tools
Video tutorials are available to walk you through using AD Workbench and cutting-edge research tools including the NTKApp2.0 and installing BCFTools and cellSNP to your virtual machine.
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