New paper on the EPAD participant panel experience
We are writing to you with the latest news of the EPAD project.
What will the world be like once the COVID-19 pandemic is over? We can all speculate, formulate, hypothesise, hope and fear – we will all have our personal crystal balls – some cloudy, some clearer, some ignored and some stared into constantly – but one thing we can all be sure of is that once this nasty little virus is gone and all we have is the scars there will still be millions upon millions of people with or at risk of Alzheimer’s disease.
The whole world is working under the proposal that: ‘Until we get the vaccine we need to do all we can to make sure we don’t get it.’ This could be paraphrased to apply to Alzheimer’s disease too – we have an ongoing and vital role to do all we can to make sure as few people get it (Alzheimer’s disease) as possible through knowledge generation that drives clinical and public health implementation.
Although the IMI period of EPAD has come to an end for many of us in June and the rest of us in October, the aims, objectives and vision of EPAD persists. National programmes are being developed to follow up all the EPAD participants in a series of linked national and local programmes, the database and biobank is in safe hands with substantial funding from the Alzheimer’s Association and the site network is poised to be substantially extended and we will be offered a wide range of trials through the emerging GAP/EPAD collaboration. It is though a huge pity that we couldn’t initiate the platform trial which – after all – was the primary objective of EPAD. Over the weeks and months ahead though we can formally analyse the reasons for this as platform trials are proving to be of massive value in testing new treatments for COVID-19. Perhaps the Alzheimer’s trials world wasn’t quite ready for us – they will be though one day, hopefully soon…
In amongst all these developments and focus on COVID – we released to the world the V1500.0 dataset on schedule and in September we will release the entire EPAD dataset to the partnership and we will work on global release and open access through our collaboration with the Alzheimer’s Disease Data Interoperability Programme which launches formally very soon.
In essence the incredible and valuable contributions we’ve all made since 2014 – including the contribution of our over 2,000 research participants – has created phenomenal momentum and has generated legacies, assets, opportunities and hope for a huge, inspired and inspirational community. The only real challenge is to make sure we each can remain motivated, committed and believing when the (virtual) world manifests such unreality and such distraction.
One thing that is real and certain though is that once this nasty little virus is gone, hundreds of thousands of people will have died from Alzheimer’s disease who shouldn’t have and millions more will still ‘get it’ in the years ahead. If you were asked – ‘what did you do during the COVID Pandemic?’. ‘I kept working to find a cure for Alzheimer’s disease….’ isn’t too shabby an answer.
We will have a virtual General Assembly meeting in September and with our friends in NEURONET, we will meet as early as we can next year face to face to talk about what we’ve done, what we’re doing and what we still need to do. Until then keep safe and keep the faith.
Craig Ritchie, EPAD Co-coordinator
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