EPAD - European Prevention of Alzheimer's Dementia

European Prevention of Alzheimer's Dementia

- Newsletter January 2019 -

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Welcome

Dear Friends and Colleagues,

It’s amazing to think that we have just entered the final year of EPAD and there are a lot of incredible achievements to look back at. There have been some real successes but there have also been some disappointments. 2019 is going to be a year of transition for EPAD as we look forward to the post-IMI period – now badged EPAD2. We need to make sure that we learn from both our successes and our disappointments, from what helped us progress and what challenged us as we move forward. I’d argue that to make sure this works, the focus for 2019 has to be the consortium as a whole speaking, listening to and learning from each other about why we succeeded and why we have fallen short. The biggest success of course is that by the end of the year we will likely have 2,500 research participants in the EPAD Cohort some with 3 years of annual, longitudinal data. This is bigger than ADNI and AIBL combined; projects that we are often compared to and learnt an awful lot from. Not bad folks. Problem is we promised 6,000! Over the first 4 years of EPAD we have continued to witness ongoing failure of new drugs being developed for Alzheimer’s disease and whilst there has been a tangible recognition that the EPAD PoC design is the right way to do Phase 2 for disease modification - we haven’t been able to turn fully the ship of conservatism in trial design. We have several interventions in our pipeline but for a series of reasons we haven’t been able as yet to convert that into ‘First Patient In’….

My personal reflection is that maybe we tried to drive this project in the early days too much on optimism and belief grounded by the fact we had a simple and clear objective BUT a simple and clear objective does not mean that this is a simple project to deliver. This is a vast and complex project with now 39 partners, 40+ trial delivery centres active or in set up and over 250 people working in some way on delivering EPAD. If you set up in the belief that this should be simple then you are destined for delays and disappointment. In some ways I think it took us too long to realise just how complex this project is and has been and also I think we may have for too long hidden the complexity of the project from view to many key people and partners. Making sure that everyone in the partnership got some first-hand insight into the complexities that only a small handful of us see may have helped us to deliver some key objectives earlier.

We must learn and listen to each other to ensure that EPAD2 doesn’t replicate the ‘storming’ phase that Carlos taught us of in Barcelona so many months ago. Reform EPAD for sure but only those parts that can benefit from reformation to reach our primary objective – which cannot change. 

For me then in 2019 as one of the leads throughout the duration of the project and into the transition - I want to make sure we can listen to ALL the voices in the project, not just those closest to the middle or those that shout the loudest. This is especially true of the early career researchers who after 2020 would be expected to take on more senior roles eventually taking over the leadership of the project. 

Each principal investigator, each partner, each work package has to now speak up and really think what they want EPAD2 to be - how can the next 5 years improve on the last. How can we ensure we don’t lose sight of the goal but give us an even better chance of reaching it?

I am fully aware that we do need the data out from the cohort and the drugs into the trial - I can promise that both will be delivered very soon!

Finally, this project remains vital and indeed pivotal within our field of medicine.

In the 5 years since EPAD started there have been no new tests or drugs in our clinics ..... none! The need for EPAD in 2019 then is as great or maybe even greater than in 2014; so while there have been delays and disappointments within the EPAD project my appeal for all of us in 2019 as we transition to EPAD2 is to learn, look forward, remain collaborative, courteous and collegiate and collectively we will ensure in 2024 we have ‘changed the game’ we promised to change 4 years ago.

We hope you enjoy this issue of the EPAD newsletter! Happy Reading!

Craig Ritchie

EPAD Co-coordinator

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EPAD turns four!

2018 Highlights

EPAD turns four!

Another EPAD year has passed and we are proud to look back at a lot of successful deliveries and established relationships. To celebrate turning four, we look back at some of our key achievements of the past 12 months. January On 16th January, the EPAD Academy officially started its first activity by proposing online webinars by world-class senior researchers on …

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EPAD Research Participant Panel presented at 28AEC

The Story behind the Picture

EPAD Research Participant Panel presented at 28AEC

On 29-31st October, Alzheimer Europe held the 28th Alzheimer Europe Conference “Making dementia a European priority” in Barcelona (Spain). This year, the event gathered more than 800 participants from 46 countries including 35 people with dementia. The programme included 239 oral presentations and 175 poster presentations. We were glad to see our epadista Jose Luis Molinuevo (BarcelonaBeta Brain Research Center) …

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Meet the EPAD team

Interview with Marija Jovanovic

Interview with Marija Jovanovic

What is your current role in EPAD? I joined EPAD in October 2018 and am assigned as a lead EFPIA partner responsible for oversight of the Longitudinal Cohort Study (LCS), working alongside the Chief Investigator office at UEDIN.  I am a member of Work Package 4, currently leading the LCS Recruitment Core Team and am also involved in Work Package …

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Interview with Sammy Danso

Interview with Sammy Danso

What is your current role in EPAD? I am the resident Data Scientist based at the University of Edinburgh and I work closely with the International Coordinator for EPAD work package 4. The work package 4 includes the Longitudinal Cohort Study, which involves collecting and managing all the datasets that are collected from different sources in collaboration with EPAD industry …

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EPAD design

EPAD presents @

•  14th​ International Conference on Alzheimer's and Parkinson's Diseases and related neurological disorders, 26-31 March, Lisbon (Portugal)

• 11th annual Adaptive Designs in Clinical Trials conference, 1-2 April, London (UK)

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Quarterly Quote

"Nothing in life is to be feared, it is only to be understood.
Now is the time to understand more, so that we may fear less"

 - Marie Curie -

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