Once a year, many of the European Prevention of Alzheimer’s Dementia (EPAD) team meet in a General Assembly to discuss the study progress and future plans. Referred to as the “Epadistas”, maybe reflecting the sense of revolution as opposed to evolution of the EPAD approach to preventing dementia, the 150 EPAD study team who attended cover all the various aspects of pulling together a world-leading project that aims to prevent Alzheimer’s dementia. In the full project to date we have well over 700 scientists, researchers, administrators, other experts and research participants making up the EPAD family.
The General Assembly in Stockholm provided a chance to gather everyone together from across many different countries who work on the EPAD study. There are so many crucial components to EPAD, namely; the science behind which tests and assessments we should use to best detect very early changes that occur years before dementia develops; the methodology of how we design a huge pan-European study that results in a large and meaningful set of data; building the platforms for recruiting all the kind participants who volunteer their time for the study; undertaking data collection and carrying out the assessments that the EPAD scientists have identified as worthwhile; managing the whole project in terms of keeping to deadlines agreed and tracking progress; ensuring the EPAD study has ongoing funding as following participants over time is the only way to tackle the early dementia pathology and finally, and crucially, covering all the ethical aspects of doing research around dementia.
Impressions from the Centre for Dementia Prevention researchers
It was a huge delight for the nearly 20 researchers from the Centre for Dementia Prevention to spend the few days in Stockholm and have the centre director and Academic Lead of the EPAD study, Prof Craig Ritchie lead on the discussions together with the EPAD Coordinator Dr Serge Van der Geyten from Janssen pharmaceuticals. The discussions of the assembly emphasized the importance of collaboration between the different sites that deliver and sustain the EPAD study. This was echoed by the impressions from the Centre for Dementia Prevention team after the assembly. Prof Craig Ritchie noted: “The General Assembly in Stockholm, the third since the project began, was a real watershed for the project as we see all the planning come to fruition and we start gathering data and new friends in the shape of thousands of research participants from across Europe. There is so much still to achieve but the willingness and passion from all the Epadistas assures success! I can’t wait for the 4th General Assembly in Amsterdam”. Emma Law, who is setting up new sites in Scotland to enable more participants to get enrolled in the study, said: “The assembly was a great networking opportunity as well as a learning experience. We have the knowledge and impetus to get the remainder of the proposed sites in Scotland up and running. We have taken the ‘call-to-arms’ seriously!”.
Dr Graciela Muniz-Terrera, a senior lecturer in Biomedical statistics at the Centre for Dementia Prevention said the assembly was a great opportunity to see how all the different pieces of the puzzle fit together so smoothly. Prof Adam Waldman who leads on brain imaging in the Edinburgh site said: “It was good to put faces to the names of many colleagues with whom I’d shared teleconferences. We had a useful imaging Scientific Advisory Group meeting around scientific outcomes and the consensus paper. It was also helpful to hear plans for the overall project, and see the work of other work groups.” The EPAD researchers were thrilled to be greeted by Queen Silvia of Sweden who opened the 3-day assembly with a clear message of support for the important work the EPAD study does. Senior Clinical Research Fellow Dr Tom Russ noted that it was fantastic to learn about the extensive work Queen Silvia has been doing around dementia in Sweden.
Discussions on existing plans and what’s new in EPAD
With a massive project like EPAD, the progress is constantly reviewed and new approaches considered, making the delivery of this ambitious study high quality and realistic. As the conference dinner was arranged in the impressive Vasa Museum, a ship that famously sank because there was too much artillery onboard, Prof Karen Ritchie who is the lead neuropsychologist in EPAD said: “I just hope that taking us to dinner to see a magnificent ship, which sunk because there were too many canons on board, didn’t reflect any deep-seated anxieties on the part of the Primary Investigators!”.
EPAD is designed to be an adaptive drug study – after initially collecting a large amount of data and setting up a cohort of participants, there will be drug studies aimed for people who are identified as being at higher risk of developing Alzheimer’s dementia. In addition to discussing the existing plans and nuances of where to be flexible in order to meet the aims of the project, there was an exciting announcement that the first candidate for a drug study will likely happen in 2018. It was also fantastic to hear about the EPAD Academy which will provide early career researchers an opportunity for postgraduate research programmes. This year, the EPAD Academy was represented by M.D. and PhD students Dr Hinesh Topiwala and Stina Saunders (as they were the only poster presenters, they graciously agreed to share the Best Poster prize between them!).
EPAD research participants at the heart of the EPAD project
The highlight for many though at this year’s General Assembly was undoubtedly the presence of an EPAD research participant. The EPAD study believes it is vital to involve the participants in every aspect of the study and communicate the work we do with our collaborators and general public. We’re very thankful that Eileen was willing to come along to the assembly to share her experience of being a research participant in EPAD. On behalf of the EPAD study, we wish to say a huge thank you to all of the participants again who donate their time to dementia prevention research. Your help is vital to the success of large-scale projects like the EPAD study and here are Eileen’s impressions from her Stockholm stay.
“What an exhilarating event the EPAD General Assembly in Stockholm was!
As the representative of the research participants’ panel I came home with a head full of data and debate, conversations and impressions, the main one being of a very hard working and welcoming EPAD team who all love what they are doing and are very committed to it.
Prof Craig Ritchie was great at giving credit to members of the team and was obviously committed to the setting up of an Academy, which would support new researchers, including Stina Saunders and Dr Topiwala.
He urged everyone from all the centres to achieve their targets as they are so close, and argued for the value of including research participants. This was reinforced by other speakers and also individual people from the audience who introduced themselves to me during the conference.
Looking back, the thoughtful opening address by Queen Sylvia of Sweden emphasised the importance of the EPAD project and what could, and needs to be achieved.
Thank you very much for giving me the opportunity to represent you Epadistas in Stockholm, it was a wonderful and thought provoking experience.”
Epadista Eileen Penman