Category: News

Paris, January 15, 2015 The members of the EPAD initiative today announced the start of a novel collaboration between academic and private sectors to test innovative treatments for the prevention of Alzheimer’s dementia.

Previous attempts to bring new drugs for Alzheimer’s disease to the market have been disappointing despite a high level of investment. However, the realisation that Alzheimer’s disease is a progressive disorder and that early intervention may be more effective has led to research efforts being focused on prevention. The goal of the initiative is the prevention of dementia in people with evidence of the disease (such as biomarker abnormalities as identified by specific tests), who still may have little or no complaints or clinical symptoms.

(more…)

The European Prevention of Alzheimer’s Dementia (EPAD) project held its consortium meeting in Edinburgh, Scotland on 19 to 21 May 2015.

The title of the meeting, “Science, Collaboration and Progress” was very appropriate. There were many lively debates between leading researchers, clinicians, ethicists, lawyers and representatives of both pharmaceutical companies and people with dementia (Alzheimer Europe and Alzheimer Scotland).

The key issues were about the scientific, practical, legal and ethical implications related to the setting up of European-wide virtual register of 24,000 patients, of which 1,500 will be invited to participate in a trial to test new treatments to prevent Alzheimer’s dementia.

This initiative is a joint undertaking between the European Union and the European Federation of Pharmaceutical Industries and Associations (EFPIA).

The members of EPAD’s communication team held a two day meeting in Barcelona on 9-10 April 2015.

They discussed the ongoing development of the project communication plan and dissemination materials, such as the website, the internal and external newsletters and the project brochure.

The partners also established dissemination procedures – including impact measures – for scientific publications and other communication items.

Finally, they reviewed the agenda for the first EPAD General Assembly that will take place on 19-21 May 2015 in Edinburgh, Scotland (UK).

This year, the International Conference on Alzheimer’s Disease and Parkinson’s Disease (AD/PD) took place between 5-9 March in Lisbon, Portugal. With over 600 presentations spanning six parallel sessions, the conference drew more than 4,700 participants from around the globe.

Amidst the array of presentations and discussions, one of the highlights of the conference momen was the symposium organized by the Alzheimer’s Disease Data Initiative (AD Data Initiative), titled “How several key efforts are making their data and samples accessible to the broader research community.” Jean Manson, EPAD Principal Investigator, was invited as a guest speaker. In her presentation, Jean highlighted the EPAD open-source data, imaging and samples. She emphasised the project’s commitment to facilitating data accessibility and collaboration within the research community.

EPAD offers a way of accessing the data, samples and image data collected during the EPAD Longitudinal Cohort Study to academic researchers, institutions and companies from all over the world. This is shared through secure online Workspaces via the Alzheimer’s Disease Workbench.

Moreover, Jean Manson and Josie Butchart, engaged with attendees at the AD Data Initiative booth during the conference. The dissemination of EPAD flyers at the booth further enriched attendees with comprehensive information about the EPAD project and its repository of data and samples.

For more information about the conference and the EPAD project, please visit AD/PD 2024 and EPAD’s website, respectively.

On 16 and 17 May, the Euro-PAD initiative held a scientific symposium in Amsterdam, aimed to discuss the latest developments in neuroimaging and biomarkers for Alzheimer’s disease. This year, the event began with two imaging workshops on the advancements in Positron Emission Tomography (PET) and advanced Magnetic Resonance Imaging (MRI) quantification.

The first afternoon of the symposium officially commenced with a warm welcome from Frederik Barkhof and Lyduine Collij, establishing a collaborative atmosphere for the event. Over 70 participants attended the meeting in person, highlighting the strong interest and commitment within the scientific community. The opening session featured an overview of the Euro-PAD initiative, highlighting the substantial progress made over the past year. The symposium’s agenda was packed with insightful scientific sessions covering key topics such as the use of Amyloid-PET in the clinical routine and trials, advancements in disease modelling and MRI-PET analysis. Additionally, on the second day, sessions covered topics on imaging/genetics and developments in fluid biomarkers.

Euro-PAD continues the pioneering efforts of the AMYPAD pan-European collaborative framework, integrating several major cohorts including EPAD, AMYPAD, ALFA+, Prevent-AD and Microbiota. This year, new cohorts were introduced, including the T-POT study, Insight-preAD, SCIENCe and REALAD, reflecting the consortium’s expanding scope. The two-day event was marked by lively discussions where delegates had the opportunity to present their latest results, share insights and explore potential collaborations.

EPND is working to accelerate global progress in neurodegenerative disease diagnostics, treatments, and biomarkers. The EPND Catalogue brings information about data and biosamples from existing research programs together in a scalable and sustainable platform, providing a single point of access for research discovery and collaboration. 

The next iteration of the EPND Catalogue expands upon a first-of-its-kind, open, accessible database. It provides discoverability and access to more than 75 studies from 17 countries covering 12 disease areas with more than 240,000 participants, including the EPAD Longitudinal Cohort Study.

Responding to feedback from researchers, cohorts and data scientists, updates to the EPND Catalogue enhance the visibility and discoverability of studies, offering new pathways for collaborative research and sharing of biosamples and data. The EPND Catalogue now offers:  

• Improved search and filter functions, with a streamlined interface allowing researchers to easily discover and connect with studies of interest.  
• Additional categories of information and metadata on study design, participants, datasets and bio sample collections, and their use and access conditions. 

Join the EPND Catalogue community and change the future of neurodegenerative diseases.  

• If you have not registered to explore EPND catalogue research, register here.  
• Already an EPND user? Dive into the enhanced EPND Catalogue  
• Use the EPND Catalogue user guide to learn how to add information about your studies, datasets, and biosamples. 

Over the last decade, substantial efforts have been invested in the development of initiatives, resources and infrastructures for data sharing from clinical research studies. Data sharing has the potential to accelerate and advance dementia research, allowing scientists to make new discoveries using existing data from clinical cohorts, trials and registries. In a Special Symposium organised at the 33rd Alzheimer Europe conference in Helsinki, panellists showed how shared data has generated important insights on the causes, risk factors, diagnosis and treatment of dementia, discussing past challenges and future prospects. The concept of data sharing is not a new one: long before the advent of computers, health economists performed secondary analyses on data from government reports, and meteorologists shared information on weather patterns.

First, Sarah Bauermeister (University of Oxford), provided an overview of the Dementias Platform UK (DPUK) data sharing platform. DPUK gives researchers anywhere in the world access to high-quality, multi-modal data from 63 population and clinical cohort studies. Sarah also explained how analysis of shared data was able to reveal connections between early life adversity and mental health issues in later life, including depression, partner relationship strain, and poorer cognition.

The next speaker was Francesca Mangialasche (Karolinska Institutet), Executive Director of the World Wide FINGERS global Scientific Coordinating Center. The World Wide FINGERS network comprises research teams from over 60 countries across the globe, and Francesca detailed their efforts to harmonise global data from the FINGERS studies, to generate robust evidence on dementia prevention. The Alzheimer’s Disease Data Initiative is supporting permissioned, secure access to FINGERS study data via the AD Workbench – a data sharing platform that also powers the EPND (European Platform for Neurodegenerative Diseases) hub.

The third speaker in the special symposium was Sandar Aye (Karolinska Institutet). Sandar brought the health economics perspective, showing how data from the SveDem population registry can inform mortality and cost analyses for new dementia treatments. SveDem is a Swedish registry study that was initiated in May 2007, recruiting patients from memory clinics across Sweden. To date, over 100,00 patients with a dementia diagnosis have been included in the registry, with yearly follow-up.

Closing the special symposium, Stina Saunders (Linus Health and University of Edinburgh) brought the focus back to the participant perspective. Focusing on the European Prevention of Alzheimer’s Dementia (EPAD) longitudinal cohort study (LCS), Stina highlighted the valuable contributions of over 2,000 research participants from several countries in Europe. Thanks to their efforts, the EPAD-LCS has generated a valuable biobank and a vast, rich dataset, which is available on the AD Workbench.