From 15-17 May 2019, the EPAD project hosted its annual General Assembly meeting in Geneva (Switzerland). We were delighted that the event brought together EPAD delegates to discuss progress, latest developments and future plans. In attendance were scientists, researchers, representatives from pharmaceutical companies, patient organisations, SMEs, EPAD study site members, other experts and research participants from across many different countries, who make up the EPAD family (also referred to as “Epadistas”!). The meeting was hosted by the Centre de la mémoire of the Geneva University Hospital, the University of Geneva and the Centre Leenaards de la mémoire of the Centre Hospitalier Universitaire Vaudois de Lausanne and kindly co-sponsored by MSD and Janssen.
The General Assembly meeting commenced with Giovanni Frisoni, Serge Van der Geyten and Craig Ritchie welcoming almost 200 attendees (exceeding any of our past General Assembly meetings). They reflected the evolution of EPAD and introduced the agenda for the coming days. Craig Ritchie then briefly introduced the EPAD project, explained the EPAD flow and its crucial components. The EPAD Proof-of-Concept (PoC) platform has been developed to speed up the development of effective, safe medicines which slow down or prevent the development of Alzheimer’s dementia. Craig stated that the recruitment into the EPAD PoC is exclusively from the EPAD Longitudinal Cohort Study (LCS). It was interesting to hear that the EPAD PoC team is being directly approached by many potential Intervention Owners.
We have now entered the final year of EPAD, with the project officially ending by the end of December 2019. However, there was an exciting announcement that EPAD will formally request IMI to grant a no-cost 6-month extension to the project. 2019 is going to be a year of transition for EPAD as we look forward to the post-IMI period, named EPAD 2.0.
The next session was then dedicated to the EPAD sustainability Work-Package. The team behind WP7 has made significant progress with the aim to help create a sustainable EPAD platform for the prevention of Alzheimer’s dementia which would continue the work already undertaken during the IMI funding of EPAD. Different scenarios and approaches for the project’s future were shared and punctuated by lively discussions.
The second day was full with a variety of talks from Work Package leads and members. Project outcomes were presented to the Consortium together with the updates on the current activities. It’s amazing to think that we have entered the final year of EPAD and there are a lot of incredible achievements to look back at! As a start, the current LCS status and the progress done so far were reported. We were glad to see the EPAD family of Trial Delivery Centres (TDCs) growing – we currently have 23 sites open of which 21 are already enrolling across 7 European countries and more than 1,600 research participants screened. We just welcomed two new sites on board that were activated in May 2019 – Fundacio ACE (Barcelona, Spain) and Centre Hospitalier Universitaire Vaudois (Lausanne, Switzerland). Additionally, over the next weeks and months we will open additional sites since TDCs from a total of 11 European countries are identified for participation in EPAD. It was interesting to hear from Kristy Draper, EPAD Global Trial Lead (the University of Edinburgh), who introduced the potential PoC appendices and the progress towards the first PoC Trial. All vendors have been selected and the necessary processes are in place. The contract negotiations and appendix drafting are ongoing and the team is aiming for a start next year with the inclusion of the first candidate for the PoC in Q2 2020. We were pleased to witness how EPAD enables researchers from all over Europe to collaborate and share findings to pull together a world-leading project that aims to prevent Alzheimer’s dementia. Following the Work Package updates, Elisabetta Vaudano IMI Principal Scientific Officer, gave a presentation on IMI and shared some recommendations.
After an energetic coffee break, the afternoon session focused around workshops, giving everyone the opportunity to attend parallel sessions of interest. These breakout sessions on amyloid disclosure, online registries, sample management and data access were hugely valuable. One of the highlights was the presentation of the EPAD Research Access Process, designed to give academic researchers and institutions from all over the world a way of accessing the data, samples and imaging data collected during the EPAD LCS. The study data is made available in secure online workspaces in order to facilitate collaboration between people and teams with similar research aims. Another exciting announcement came on the second day that we now have released the first wave of data (v500.0) from our research participants. The data are now available for EPAD researchers only until November when access will be opened to the entire research community. That said, EPAD members can now begin the application process. The second day was concluded with a nice networking dinner at a typical Swiss restaurant. Before that, the EPAD’s team were lucky enough to enjoy a pleasure cruise on Lake Geneva (Lac Léman) with great views of the lake and mountains around.
The third and final day of the meeting hosted a question & answer session where all delegates had the opportunity to interact with the EPAD leadership. They received some great questions from the audience. Engaging discussions were held on the PoC platform, EPAD data, sustainability and future activities. Finally, the EPAD Consortium gathered for an EPAD Academy session. 60 young researchers (EPAD fellows) are now part of the EPAD Academy that aims to efficiently leverage EPAD resources to foster and develop academic research capacity and output in Alzheimer’s disease across Europe for maximum global impact. We heard from six EPAD fellows about their respective work covering pre-screening for EPAD trial-ready cohort, cognitive disease progression modelling, staging cortical amyloid deposition, fluid biomarkers in preclinical Alzheimer’s disease, theory of change methodology and cognitive decline prediction through structural MRI biomarkers. The EPAD fellows’ talks were an engaging end to an overall fascinating General Assembly meeting. The meeting was then brought to a close by Craig Ritchie and Serge Van der Geyten. We are very thankful to everyone who came along and we would like to thank all Epadistas for their enthusiasm and dedication.
During the three days, research participants were in the spotlight. It is important to the EPAD team that we build a conversation with our participants. We are committed to involving research participants as much as possible in the development of the project, empowering everyone to play an active role in our progress. Our participants are our partners in this project too. We’re very thankful that nine research participants from France, Scotland, Spain and the Netherlands were willing to come to the General Assembly. During the second day of the meeting, they had the opportunity to meet together within the breakout session organised for the research participant panels. We were truly humbled that they took the floor to kick start the last and final day of the event to share their views and experiences of being a research participant in EPAD. We wish to say a huge thank you to all of the participants again – we can’t do any of this without you!
It is a really exciting time for EPAD and for the PoC in specific. We look forward to the next months ahead!