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What our research participants think about EPAD Alzheimer’s disease research

Your support makes progress possible

EPAD’s work wouldn’t be possible without the support of our research participants. We are highly appreciative of the commitment so many people are making to help us change the future of patients suffering from Alzheimer’s dementia. As we move into an exciting new phase of our project with the launch of the EPAD platform for clinical trials, we are driven by the possibilities in advancing research hand in hand with our participants. Together, we are the EPAD family.

With your help, and the help of participants like Eileen, we can bring in a new era of treatments aimed at helping people with Alzheimer’s disease lead the healthiest life possible.

Eileen, EPAD research participant at the Edinburgh trial delivery centre

Eileen, EPAD research participant at the Edinburgh trial delivery centre

“To go back to the beginning, I think the invitation to become a volunteer in the EPAD project came by letter or phone (I assumed I had been asked to participate because my parents had Alzheimer’s disease). Previously, I had taken part in Generation Scotland and The Million Women Study.

Subsequent contact was always helpful, with parking space arranged for us and one of the EPAD team even coming out to open a barrier which we couldn’t get to operate!

The first visit to Edinburgh for the first tests was fascinating. All of the volunteers agreed that the young team tried their best to be welcoming and reassuring. The NHS personnel were also impressive, kind and so competent. The MRI scan let me have a lie down and a rest and the lumbar puncture was done in textbook fashion with the young doctor talking me through the procedure. We even managed an interesting conversation.

I was familiar with the cognitive tests (e.g. picture recognition, recall of information). Although the computer screen tests were trickier, I found out later that other people had thought the same, so that was OK.

From the brief conversations with other volunteers, we all feel that this research to help prevent Alzheimer’s dementia is very important and we are very glad to be able to contribute. Some of us have watched loved ones disappear before our eyes, while still alive with this disease. We want thus to stand with the young academics and researchers helping to find a cure or amelioration for it.

Research has done so much to advance treatment in heart disease and cancers. Hopefully EPAD’s assault on the prevention and cure of Alzheimer’s dementia will bring similar results.”

If you are interested in joining Eileen and hundreds of other people across Europe in becoming part of the EPAD family, read on to find out more about participating in EPAD.

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José Luis Molinuevo (@fpmaragall) mentioned @IMI_EPAD in this spanish report published in the newspaper El País. "We participate in the EPAD project, a consortium between the academic and the private sector to design more efficient Phase II trials" elpais.com/elpais/2019/02… twitter.com/fpmaragall/sta…

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10:00 am · 2019-02-14
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.@IMI_EPAD Longitudinal Cohort Study recruitment Update ⤵️ We currently have 21 European sites enrolling and 1450 research participants screened. @IMI_JU @EFPIA @EU_H2020

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8:27 am · 2019-02-13
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.@IMI_JU published the first newsletter of the year. Click here to read it: bit.ly/2UlBZE0 twitter.com/IMI_JU/status/…

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10:20 am · 2019-02-07
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The @IMI_EPAD center in @NHSGrampian shared with us their tips and tricks to run the EPAD LCS efficiently. Don’t miss the interview: bit.ly/2RKYJ3v twitter.com/IMI_EPAD/statu…

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10:17 am · 2019-02-07
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#EPADBerlin19 - Practical scenario about PoC recruitment between a study staff member and a research participant. Remarkable example of an initial conversation to let the participant know he is eligible and ask if he would like to take part in the PoC. pic.twitter.com/cNe2mSphbW

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4:38 pm · 2019-02-05
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This work has received support from the EU/EFPIA Innovative Medicines Initiative Joint Undertaking EPAD grant agreement nº 115736

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