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EXECUTIVE DIRECTOR'S CORNER
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Building a Global Data Sharing Community: AD Connect at One Year
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A year ago, ADDI, with the support of our AD Data Initiative coalition partners, opened AD Connect’s doors. Our online community’s aim is simple – break down silos and build bridges to accelerate global collaboration and open data by creating a virtual “community center.”
When members enter our community, they find a place to ask questions, leave comments, connect with peers, find mentors, and explore and share resources. It is also a great place to learn – there are offerings designed to share knowledge and kindle inspiration. Whether you are looking for technical resources for the AD Workbench or ways to broadly engage with and contribute to the dementia community, all that and more can be done on AD Connect.
Over the last year, we have added features and programs and fostered engagement by leaps and bounds. Many of our new offerings are directly from our members! If you have not visited AD Connect or it has been a while since you opened our virtual doors, I invite you today to do so.
As you explore AD Connect, here are some of the things you will find:
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Dataset Summaries: AD Connect can be your gateway to learning more about datasets before exploring them on the AD Workbench. You can find details about what potential questions could be addressed by the dataset, manuscripts that cite the dataset, discussion forums, and details about how to request access.
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Live events: Join one of our quarterly Research Roundtables to hear from a panel of thought leaders about a timely topic, monthly office hours with our resident data scientist or guest host, and special learning series that happen on select weeks that go deeper on certain topics, including some of the datasets that are permissibly accessible on the AD Workbench. If you miss a session, you can watch a recording on AD Connect.
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Instructional Videos: We have an ever-growing library of “how to” videos to expand your AD Workbench experiences. Our video library includes an in-depth look into the tools available on the AD Workbench, how to request access to a dataset, virtual machine features, and more.
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Within our first year, more than 650 members from over 50 countries have joined our community. They are discovering resources, asking questions, and engaging with their peers. To accommodate our global audience, AD Connect can now be viewed in 17 languages!
As we look ahead to the next year, we are excited to expand our offerings, hear more from our members, and engage new ones who span across institutions, disciplines, and countries. Join us as we build a future where open data and global collaboration power the end of Alzheimer’s and related dementias!
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Sincerely,
Tetsu Maruyama
Executive Director,
Alzheimer’s Disease Data Initiative
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Together, we can support each other, share resources, and inspire new ideas:
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PARTNER AND PROJECT SPOTLIGHT
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Amyloid Imaging to Prevent Alzheimer’s Disease (AMYPAD): Our Growing Partnership to Expand Imaging Data
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AMYPAD is a collaborative research initiative aiming to improve the understanding, diagnosis, and management of Alzheimer’s disease (AD) by using beta-amyloid Positron Emission Tomography (PET) imaging. ADDI is pleased to announce that the data from AMYPAD’s Prognostic and Natural History Study (PNHS) is now permissibly accessible through the AD Workbench. Login or register to explore this dataset on the AD Workbench.
The AMYPAD PNHS is an open-label, prospective, multi‐center, longitudinal cohort study linked to several ongoing European parent cohorts of preclinical and prodromal individuals. Researchers are trying to understand the role of amyloid imaging in the earliest stages of AD and increase the chances of successful secondary prevention trials.
Amyloid PET imaging can capture the extent of amyloid accumulation and the continued accumulation of amyloid burden beyond the plateau observed in cerebrospinal fluid (CSF). In addition, PET imaging provides information about the topographical distribution in the brain. The potential value of PET quantification in the assessment of amyloid burden, which is needed to facilitate drug intervention is also highlighted in the recent approval of anti-amyloid antibodies by the US Food and Drug Administration.
PNHS recruited individuals with no or minimal cognitive impairment enriched for at risk of AD from 11 European parent cohorts. This includes more than 3,300 patient level records, of which 1,600 have at least one amyloid PET acquisition. Looking ahead, the number of parent cohorts and available data (which may include quantification of advanced MRI sequences, genetics, and blood biomarkers) will be added to the dataset. For the research community, this dataset can be used to further the understanding of AD at the pre-dementia phase and create opportunities to address current knowledge gaps.
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“I think it is amazing that my visit to AMYPAD is contributing to the important research goals of AMYPAD. Contributing to such a large study with all these cohorts makes me feel like my effort will have true effect and this make me very happy!”
Dhr. V. – a research participant of AMYPAD’s PNHS.
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“We are proud to partner with ADDI to help further our understanding of the early stages of AD to accelerate scientific progress. This partnership powers global open access to the project’s data. The PNHS dataset will be maintained and improved over the years thanks to the close collaboration with ADDI.”
Frederik Barkhof (Amsterdam UMC) and Gill Farrar (GE HealthCare) - AMYPAD Project Coordinators.
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NEW DATASETS
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We have several more datasets that are coming soon to the AD Workbench. Keep an eye open for these datasets from NIA-CARD: TDP-43, the Honolulu-Asia Asian Study, and DNA and RNA Long Read Sequencing datasets. We are also working to bring you two RNA-seq datasets from the University of California, San Francisco; the API Generation study from Banner Health; the ADDIA study from Amoneta. Stay tuned to AD Connect and our social media channels for updates.
Thank you to all these organizations for your commitment to data sharing
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ANNOUNCEMENTS
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Join Us at the Upcoming Alzheimer’s Association International Conference
If you will be in Amsterdam next week for AAIC, please come by Booth #412 in the Exhibit Hall (next to the lounge) to learn more about us. Watch daily product demonstrations, chat with the team, and pick up some fun swag! You can also talk with some of our partners, including the European Platform for Neurodegenerative Diseases (EPND) Consortium, the European Prevention of Alzheimer’s Dementia (EPAD) Consortium, and Roche Diagnostics.
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NTKApp Version 2.0 Now Available
As part of version 2.0 of the NeuroToolKit (NTK) App, check out the new features now available on the NTKCuration App, NTKAnalysis App, and NTKMeta-Analysis App. This biomarker tool is exclusively available on the AD Workbench. You can find a complete list of features in AD Connect.
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Alzheimer’s Disease International Conference 2024 – Now Accepting Abstracts
ADI will hold their 2024 conference in Krakow, Poland. If you are interested in submitting an abstract, submissions are now being accepted and will close on September 29.
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RESEARCHERS’ TOOLBOX...IS MOVING
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Looking for technical-focused news and articles? This content will soon be available in a new ADDI publication “Inspire Research” that will launch in the fall. It will focus on issues of interest to new and existing (and perhaps former) AD Workbench users.
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Be the first to get news, updates, and opportunities to engage with our community by following us on Twitter.
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EVENTS
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You may find information about other conferences on AlzForum.
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While there are numerous dementia related publications made available every day, below is a selection that may be of interest to the ADDI community.
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In General
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Data Sharing
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Diversity in AD Research
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You may find additional publications on AlzForum or ResearchGate.
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“ASK ALOIS…”
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Who is Alois? In 1906, Dr. Alois Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. This was the first identification of Alzheimer’s disease.
We use Dr. Alzheimer (Alois in this case) as our inspiration to wrap up our newsletter – to answer a question about Alzheimer’s disease, related dementias, data sharing, or the world at large. Maybe you can use this to stump your colleagues or friends?
Alois, what is the global economic cost of dementia?
The annual global cost of dementia is above $1.3 trillion USD and is expected to rise to $2.8 trillion USD by 2030. This figure includes costs attributed to informal care (unpaid care by family and others), direct cost of social care, and direct medical costs. To learn more about global dementia statistics, visit Alzheimer’s Disease International.
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Are you following ADDI on Twitter and LinkedIn? Be the first to get news, updates, and opportunities to engage with our community by following us on @AlzData and AlzheimersData.
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