Alzheimer's Disease Data Initiative

Four years after the launch of the AD Data Initiative, our partners have come together to refresh the priority Alzheimer's disease research questions that initially inspired us to establish this coalition.   They now encompass a wider range of research areas, including novel biomarkers and diagnostics, potential uses of AI to accelerate research, and risk prediction in low- and middle-income countries.   Learn more about how we'll use these updated questions to drive our work.

💡 A new study, led by Dr Sarah Marzi (UK DRI at King’s) and Alan Murphy (UK DRI at Imperial), reveals key insight into how gene expression is regulated in health and disease. The findings could be applied to identify influences on gene expression in neurodegenerative conditions, helping identify new drug targets. Our genes, sections of DNA 🧬 that code for different proteins, have a set of switches and levers that tell them how to express themselves, known as epigenetics. As part of this system, there are markers on our DNA called ‘histone marks’, which are known to influence gene activity and how different genes are expressed. Dr Marzi and her team carried out the most comprehensive study of histone marks to date. They examined seven different types of histone marks across 11 types of cells, using advanced tools, including deep learning models, to predict how histone marks influence gene activity in different parts of the genome. The researchers found that histone mark function, how far they are from genes, and the condition of cells, shape the impact of histone marks on gene expression. Dr Sarah Marzi said, “In the long term, insights gained from this research can guide the development of precision medicine approaches for neurodegenerative diseases. By leveraging these deep learning models, scientists can better understand how cells regulate expression, which will help us design cell type-specific treatments that modulate disease-causing signatures to counteract neurodegeneration.” Read more: https://lnkd.in/e8HZE8z6

Yesterday was a big day for EPND: we launched the EPND Hub, a unified gateway for discovery, access and sharing of datasets and biosamples from #neurodegeneration research studies 🌟 We are hugely grateful for the invaluable contributions of study investigators who have made their #datasets and #biosamples discoverable through EPND 🙏 The Hub currently includes over 80 studies, spanning 12 disease areas and representing more than 250,000 research participants in 🇪🇺 and beyond. A resource shaped by collaboration, designed to foster shared innovation 🚀 Explore the EPND Hub and discover study profiles, datasets, biosample collections and much more. Use our tools to connect with study investigators and kick-start new collaborations 🤝 👉 https://lnkd.in/eGcTnUyt Innovative Health Initiative (IHI) EFPIA - European Federation of Pharmaceutical Industries and Associations European Commission

On our 4-year anniversary, the AD Data Initiative asked coalition partner and board member Paul Ramsey, Former CEO of UW Medicine, about the coalition’s most significant area of progress.     He spoke about how the coalition has made significant progress in multiple areas, including establishing a major database, creating greater data accessibility, expanding interoperability and connections with other data sharing platforms, establishing the William H. Gates Sr. Fellowship and providing the tools and proper evaluation methods to address priority research questions.    Paul Ramsey believes the AD Data Initiative has shown that it is possible to collect data from multiple sources and can serve as model for expanding data and tools needed to advance important areas of medical research.     Thank you for your partnership and we look forward to continuing our work together to accelerate breakthroughs in #ADRD research! 

The European Platform for Neurodegenerative Diseases (EPND) Hub launches today! Designed by researchers, for researchers, the EPND Hub is a seamless one-stop platform to discover and request access to data and biosamples from more than 250,000 research participants across over 80 cohorts. Its new integration with the AD Workbench allows researchers to use a single login across both platforms to securely request access to data and perform powerful analyses using available tools and free computing within secure, cloud-based workspaces.   Explore new functionalities on the EPND Hub today.

On our 4-year anniversary, the AD Data Initiative asked coalition partner Heather M. Snyder, Senior Vice President, Medical and Scientific Relations at the Alzheimer's Association®, about the areas of greatest potential for the coalition in the years ahead.    The Alzheimer's Association®, along with the Global Alzheimer's Association Interactive Network (GAAIN), has worked closely with the AD Data Initiative to develop robust opportunities for research discovery, collaboration and sharing. Looking ahead, Heather believes a key focus for the coalition will be identifying opportunities to link international data sets and provide the global research community workspaces to do analyses, which will benefit the entire dementia research ecosystem. It is by working together as a global scientific community, Heather M. Snyder asserts, that we will get to the treatments, preventions and diagnostic tools we need more quickly to #ENDALZ. Thank you for your partnership and we look forward to continuing our work together to accelerate breakthroughs in #ADRD research! 

Dementia robs us of everything that matters. Our memories, our connections, our story. And latest analysis reveals the devastating scale at which it is claiming lives across the UK. Dementia remained the UK’s biggest killer in 2023, claiming over 75,000 deaths. That’s one in ten of all deaths nationwide. At Alzheimer’s Research UK, we will not stop until we can save people from dementia. But we can’t do this alone. That’s why we’re urging the government to address the growing dementia crisis through its 10-Year Health Plan. Tomorrow we’ll be in Parliament, making sure they hear why this matters - loud and clear. Read more about what the new data shows: https://lnkd.in/eGVdujZq

We are excited to partner with ANSWER ALS to integrate the AD Workbench with their Neuromine Data Portal.      By providing a unified, single access platform for data sharing and analysis, this integration will enable researchers to save time and resources while enhancing the depth of their research by allowing cross-referencing of disease pathways and genetic data. Read more here: https://lnkd.in/eUtw4V9q

On our 4-year anniversary, the AD Data Initiative asked coalition partner Karen Brakspear, Head of Neurosciences and Mental Health at Medical Research Council, about the areas of greatest potential for the coalition in the years ahead.  Karen is enthusiastic about the potential for rich and diverse global data sets to unlock new insights when paired with artificial intelligence and machine learning. She is optimistic that continued global collaboration will accelerate our ability to spot the signs of dementia and begin disease progression interventions as soon as possible.  Thank you for your partnership and we look forward to continuing our work together to accelerate breakthroughs in #ADRD research!

On our 4-year anniversary, the AD Data Initiative asked coalition partner Sarah Lenz Lock, JD, Senior Vice President for Policy and Brain Health at AARP, about the areas of greatest potential for the coalition in the years ahead.        Sarah spoke about creating opportunities for deeper dives into research to help identify and close known gaps in the evidence in existing data sets, such as the relationship of menopause and the increased rates of dementia in women.  Strengthening the existing network of researchers, data experts, advocates and working together on the stubborn problem of finding ways to prevent, delay, treat or cure dementia is essential.      Thank you for your partnership and we look forward to continuing our work together to accelerate breakthroughs in #ADRD research!